PMDD: What is progesterone sensitivity and how has it hit me?

Many women feel tetchy and irritable before their periods, but for some, progesterone sensitivity can make it far worse.

Progesterone sensitivity wasn’t something I had heard of until late last year, even though it seems I’ve had just about all my menstruating life.

And it was during a phone call with menopause expert Peter Greenhouse in February that I discovered I’d suffered from premenstrual dysphoric disorder (PMDD). Until then, I’d always said I’d had “really bad” premenstrual tension (PMT). I’m not alone – up to 8 per cent of women suffer from such extreme symptoms that they can feel depressed and anxious and even suicidal.

PMT on overdrive

For me, it began around two weeks before my period, when I felt a huge black cloud descend on me and my anxiety and depression levels rise. I was irritable and angry with people and then would feel an enormous guilt about my emotions and end up sobbing in safety of the bath or shower.

I couldn’t sleep and and I lost all interest and energy in doing anything or seeing my friends. My breasts ached and my clothes were tight – I’d put on up to 2lbs on through bloating or non-stop eating; I never felt full.

There was physical pain, too. I became incredibly clumsy, not just dropping and smashing things, but bashing my head off cupboard edges and shelves and car doors.

The grey days felt they would never stop until, within a day or so of my period starting, a lightbulb clicked on and the world was good again.

This became a way of life. I didn’t need a calendar for when my periods were due; I could tell by the number of arguments I had with Mr 50Sense and the tears I shed.

Along comes the menopause

But then perimenopause hit. My periods began getting irregular and I felt amazing. For months on end, my emotions and body would be on an even keel. I lost weight – over a stone and a half – and trained for my first half-marathon.

“I never realised this was what life should be like,” I told one group of friends. “This is how I felt when I was 11.”

Sadly, it didn’t last. As my oestrogen levels did their rollercoaster drop and my progesterone lagged behind, I gradually started to feel worse and worse until it felt like I had non-stop PMT.

Ah, I hear you say, we know this story and you went on HRT. Problem solved.

HRT, if you still have a womb, comprises two parts: oestrogen and progesterone, spending 14 days on one then swapping to the other. For someone who is progesterone sensitive, that can be a ticking bomb back to the old cycle.

Within a few months, I’d noticed a pattern. The fortnight I was on the oestrogen, I felt incredible; as soon as I started the progesterone, I’d get my old symptoms again.

Only worse.

I changed patches. It continued, but the black cloud wouldn’t lift and only seemed to get thicker and thicker. Eventually, the oestrogen could only slightly dampen the negativity and in the end, I had a meltdown on Boxing Day.

The darkest hour

I wish I could say that was the worst of it, but it hasn’t been. I’ve been without HRT for most of this year and it has been hell. At first, I felt okay, that I could manage. Within a couple of weeks, I was bad again – mood swings, anger, guilt, hating myself, feeling responsible for the world, crying, crying, crying…

The Monday after Pausitivity went to parliament, I was as low as it is possible to get.

Black thoughts that hadn’t hit me even during my OCD years bombarded me, telling me what a horrible person I was until all I could think was: “I don’t want to feel this way anymore. I don’t want to be me anymore. I don’t want to be around anymore”

If it wasn’t for three wonderful women, I’m not sure I’d be here now. I owe them more than they know.

Thanks to Peter, I’d been prescribed an oestrogen gel, which I’d been taken for five days at this point. I put my trust in that and the next day, after my daily cry in the shower, rubbed it into my thigh and waited…

It took another couple of weeks, but eventually I woke up feeling bright. I did my hair and my face, got dressed and faced the day. I’ve been doing that every day since and while I’m not on top of the world, I count every okay day as a blessing.

We need to change this

This has also been another wake-up call as to how overlooked women’s health is and how much we need to keep on fighting to get the research needed. PMDD is little known about and even PMT can raise eyebrows – a friend once told me she couldn’t have PMS, as it was then, because her husband “didn’t believe in it”.

I’ll be honest, I’ve come close to giving up everything in the last couple of months as my hormones and feelings have had a ballroom blitz. But I know the relief I felt when I heard I wasn’t losing my mind and that what I was going through was explainable, understandable and controllable.

If you haven’t already done so, join us in the KnowYourMenopause campaign to highlight the need to have posters showing menopause symptoms in GP offices. Plus sign the MakeMenopauseMatters petition to get better training in menopause for our GPs. Because if we can get these done, then we know we’re on our way to getting women’s health the respect and attention it needs.

It is only by making our voice heard that we can stop other women suffering.

What is progesterone sensitivity?

Progesterone is a sex hormone mainly produced in the ovary to get your womb ready for pregnancy. It is released in higher levels after you ovulate (about day 14) in the expectation that the egg may be fertilised. If that doesn’t happen, levels start to drop again, you have your period and a new cycle begins. It is also made in smaller amounts in other parts of your body.

PMDD is not a hormone imbalance; rather it’s how your brain reacts to the hormone. Scientists believe that in some women, progesterone can affect the part of the brain that controls emotions, behaviour and general sense of well-being. Researchers in Melbourne think it is the receptors in the brain that help us deal with anxiety and stress that are affected by changing levels of progesterone.

What are the symptoms of progesterone sensitivity?

There are a lot and if you’re going through a bad menopause, you may recognise some of them.

  • Crying, feeling sad, hopeless or suicidal
  • Anxiety and stress
  • Panic attacks
  • Mood swings
  • Irritiable or angry with other people
  • Lack of motivation or interest in life or relationships
  • Difficulty conentrating or thinking
  • Tiredness and fatigue
  • Cravings
  • Eating too much
  • Insomnia
  • Feeling out of control
  • Bloating
  • Sore breasts
  • Headaches
  • Muscular and joint pain

How does this make you feel? I know looking back, I can pinpoint the angry message on social media or the stinging email to those weeks when I was on the progesterone part of my HRT. It felt as if a devil had got inside me and was controlling my actions, that I wasn’t in control and was compelled to do this. Honestly? It’s a frightening way to be.

How can you control progesterone sensitivity?

Unless you no longer have a womb, progesterone is needed as part of your HRT to help protect against endometrial cancer. Oestrogen causes the lining of your womb to thicken; progesterone helps shed that in the form of a monthly bleed (a faux period, if you will). This is the reason women who have had hysterectomies can take oestrogen by itself.

For people with progesterone sensitivity, the trouble is that HRT preparations in tablets or patches flood your entire body with the hormone. If you have PMDD, it’s bad enough with the majority of your progesterone being in your womb so to have a sudden whoosh around all of you…

Many GPs will prescribe the Mirena coil, so the progesterone is being delivered directly into your womb and will have less chance to have a party in the rest of you. You can also get progesterone pessaries to insert in your vagina, although this is off-licence for the NHS.

I’m on the coil journey, although coronavirus means my original appointment to have one fitted has been cancelled. You can be on oestrogen gel without progesterone for up to six months, but most GPs counsel 12 weeks. It’s another reason why I’m hoping the Covid-19 crisis will be over soon as the thought of having to stop the oestrogen is too scary.

Helplines and further contacts

If you’re on Twitter, I follow Vicious Cycle: Making PMDD, PMDD and Me CIC and Describing PMDD for loads of information and help.

There’s also the International Association for Premenstrual Disorders and the National Association for Premenstrual Syndrome.

Finally, if you’re feeling low and need someone to talk to, whatever you’re going through, please contact the Samaritans on 116 123. If you can’t face talking, text SHOUT to 85258 anytime day or night and you can chat by text to share what is worrying you.

A huge thank you to Peter Greenhouse and also to Dr Andrew Weber of Bodyvie Medi-Clinic, Richmond, for his help and advice. Any errors are mine.

Have you experienced PMDD? Please me know in the comments below. Your experience could help someone

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62 thoughts on “PMDD: What is progesterone sensitivity and how has it hit me?”

  1. Thanks for raising awareness of this! I had a lot of the symptoms you describe in the perimenopause stage, particularly bring teary which was unusual, and a meltdown on Christmas Day in front of my new stepchildren. HRT has helped but having to have different formulations because of one bring discontinued, and the shortages, hasn’t helped.

    1. You’ve hit the nail on the head, Gail. Having to swap HRT treatments because of all the problems has definitely exacerbated how bad I’ve felt at times. I haven’t been able to have what the GP wanted me to have; only what the pharmacist had. I hope you’re feeling better now xxx

      1. Thank you so much for this info!! Unlike many of my friends through the years I was lucky enough to have very little moodiness during my menstrual cycle. But 5 years ago (now I understand is was the start of perimenopause) I start feeling many of the symptoms people have mentioned here… not feeling like myself, low mood, irritability, etc etc. I started going to a therapist thinking I was depressed. I am so disappointed/ frustrated/ angry that no one in the medical field told me my “feelings” could be related to perimenopause. I am now on HRT, which has helped some, but my Dr has not explained any of this to me. I did not even know the HRT pill packs are half estrogen, half progesterone. I assumed each pill was a compo of both hormones. Nor did my Dr talk to me about any of the tropical or patch options you talk about.

  2. This has been more informative than any doctor I’ve spoken to, Thank You. Ive just had my hrt review, I complained about pmt, I’d controlled this in my 30s with evening primrose oil. Now with the patches, my breasts are painful, the bloating, back ache, irritability… it’s all normal apparently! Aghhh, I’m tempted to come off completely as I don’t feel listened to.

    1. Hi Pauline. I’m so glad this has been of help to you, but it’s awful to hear what you’ve been going through. First of all, if you do decide to come off HRT, please wean yourself off slowly. A sudden jolt to your hormones could really impact your emotional wellbeing. I moved on to Evorel Conti at the start of the first lockdown as I couldn’t get the treatment I was supposed to have. However, after discussing this with a few people who have also been down this route, I asked for anti-depressants too as I was scared of dropping so low again. I had a lot of irregular bleeding to begin with (about six months) but it has died down now and I do feel a lot better. I still get a very mild PMT but it’s manageable in a way it never was before. And my breasts get full and ache every now and then, too. I think there may be light at the end of a very long tunnel….

      1. Hi,

        I am on oestrogen with utrogestin capsules which I can take orally or vaginally. I am certain that I am progesterone intolerant. I take as little of the progestin as I dare, but after upping the levels recently I feel absolutely terrible. All the wretched emotional effects that you describe.
        Are you aware of any regimen that is safe, but which incorporates the lowest possible progesterone dose?

        1. Hi Lindsey. I’ve been told that the best way to take progesterone if you think you have a sensitivity, is topical, so via a patch or vaginally or through the Mirena coil, so it goes exactly where it should be. Taking capsules orally floods your whole body with progesterone. I’m on patches and I’ve decided to take anti-depressants while I wait for a coil fitting, which has been delayed because of covid. It’s taken a while – nine months – but I feel okay most of the time. I would say I’ve been okay for the last 2-3 months. I have a few blue days, but in this world, who doesn’t? Perhaps discuss a coil with your GP? Certainly go and see them and ask for help. Don’t suffer any more and please let me know what happens xxx

  3. Have u has the coil fitted yet and how are you getting on ?
    I am definitely progesterone sensitive and just recently had the Mirena fitted along with oestrogen patches. I have never Been so rough. It seems to have exasperated all the symptoms I had it put in for !!
    I don’t know if it’s the oestrogen or progesterone but I suspect the latter . Not sure if to stop the oestrogen and leave mirena in or scrap both – get me off This journey !

    1. I haven’t had it fitted, but I have heard of someone else who felt bad after having it and she went off HRT all together. I do know, however, that it’s taken me a while to get on an even keel and I’m happy with the Evorel Conti. Whether that’s also because I’m taking anti-depressants for the progesterone, I don’t know! But the first 4-5 months on it, I still had very, very rough times. It is only in the last few months I’ve felt better.

  4. I got the mirena when I turned 40. It was horrendous for 4 months but then amazing for 10 years. I’m now on HRT and suffered so badly on my 2 weeks of progesterone cycle that after 2 months it was clear that I’m very sensitive to progesterone (such LOW mood, angry at everything, and such bad thrush) Now I’ve been told to only take progesterone (vaginally) every 4 months for 12 days instead for every two weeks (in fact as I’m post menopause I should be taking it daily). Anyway I should be taking the progesterone this week but I’m terrified. I’m making all kinds of excuses (starting a new job, covid lockdown, teaching online, didn’t sleep well last night, the weathers not great today!!) but I know it will have to be taken. Wish me luck.

      1. I am very sensitive to progesterone. I tried pills and was miserable. I recently tried the Skyla IUD and all the symptoms came back so I had to take it out. I am still feeling some of the symptoms and its 4 weeks out. I am at a loss what to do. Go off HRT or have a hysterectomy or try the progesterone again for 2 weeks every 2 or 3 months. Or try BHRT progesterone cream, but I’ve been told by a few mainstream Drs that the BHRT progesterone cream does not protect the uterine lining. BHRT Drs say the progesterone cream does protect the lining. Ugh!!! No good choices. Be miserable either off HRT or on progesterone, have a serious operation and its effects or take a chance and use BHRT progesterone cream and if I’m not sensitive to it take a chance of getting cancer.

        1. Hi Sandi. It’s a merry-go-round, isn’t it? We just want an answer and to feel good! I’m with your mainstream guys – BHRT to me is complicating HRT to get women to pay out more. There are lifestyle ways you can look at helping menopause symptoms. Have a look at The Happy Menopause by Jackie Lynch. It’s a great book for this. Everyone is individual, but I’ve decided the way I deal with this is with anti-depressants for the progesterone downers. It’s helped me find my peace.

  5. Thank you so so much for all of this. I’ve suffered all of my life with bad PMT and never realised it could be progesterone. I started menopause about 3 years ago and suddenly started feeling so different and I loved the feeling but I have vaginal atrophy and zero libido so started HRT. Wow what a mistake. The 1st one contained norethisterone, I became so snappy and really down. Swapped to a different progesterone 6 days ago, yesterday was an awful day, I kept getting surges of anxiety and didn’t want to get out of bed, headaches, bloating, sore breasts, I feel hopeless, can’t concentrate. I didn’t take it last night, I can’t bear the feelings. I want this awful cloud to go away. I’m so angry at myself. Anyway, thank you for 50sense. It’s such an amazing source of help and advice

    1. Hi Helen. I’m so glad this has been helpful to you – but please, don’t be angry at yourself! This is our hormones talking and we are as vulnerable to them as we were when we were teenagers. I now take anti-depressants to counter-act the progesterone devil and while it was a difficult decision (we hear so much about ADs), I’m glad I did. Things seem to be a lot smoother and less stressful. But they’re not for everyone. Please go back and discuss further options with your GP. I actually have to do that tomorrow as I have the results from seeing a gynae… Not looking forward to it but better I know and can take action. Please keep in touch x

  6. Hi – great to see these issues talked about- I started to think I was sensitive to progesterone over 5 years ago when I talked to my doctor and we changed from an implant to the mirena coil. What a difference after a couple of months – the horrendously heavy periods ( and anaemia) finally stopped- as did the monthly shouting sessions. When the menopause started for me I could feel the impact of dropping estrogen and it felt like pmt all the time. I started on the estrogen patches which have worked well for until a couple of weeks ago. My mirena coil ran out and so I was brought in to get a replacement fitted…. all good so far – then a new one couldn’t be fitted because my womb appeared to have changed shape. So the gp proscribed evorel conti (lower estrogen than I had before) and the mini pill since apparently at 54 I’m still at risk of pregnancy!!!! I’ve not had a period for years but the coil does that… so now I’m on less estrogen and about 10 times more progesterone than before – admittedly mostly from the hrt patch. I feel dreadful and am going to be looking for ways to either get a coil refitted, drop the pill and or stop hrt completely.

    So for others wondering- I found suggest that the mirena coil worked very well for me to give the lowest level of progesterone right where it was needed.

    A recent ultrasound found my womb was ok so that’s reassuring. However I’d like to know if I’m post menopause- no family history to help me either. Has anyone been offered blood tests to check whether they are post menopause? They seem to be used in other countries and the consultant who did the ultrasound appeared surprised that I hadn’t had one.

    1. I haven’t heard of blood tests to see if you’re post-menopausal, to be honest. The ones I’ve heard of are for when you’re under 45. But that’s no surprise as women are the last to hear about these things!!!!

      I was on Evorel Conti too and I asked for anti-depressants as I was so worried about the impact of the progesterone. I couldn’t face feeling that way again. It all worked together and I felt… okay. Not great, but not wanting-to-jump-under-trains bad. I wish I could get this HRT buzz everyone talks about. But now it seems Conti isn’t right for me so it’s gel and progesterone tablets. I’m on the gel at the moment and then start the tablets in a week’s time. It’s fair to say I’m a little worried…

      Thanks for dropping in and sharing Merion. The more we talk, the better it gets for everyone xxx

      1. You can get estradiol and FSH levels tested. If you’re 12 months without a cycle and estradiol is consistently low and FSH is consistently high that would indicate menopause. I technically have menopause levels but have not gone the year with no cycle.

    2. I also have had the best luck with using the Mirena for both birth control & PMDD management. It was life changing when I got the first one 10+ years ago!!
      I still have it & am going thru peri-menopause. This article has helped more than 2 gyno doctors I’ve seen – neither could say if I should stay on the Mirena or remove it to help/adjust the natural hormone fluxes.
      I’m only getting a “period” that consists of spotting and pmdd symptoms every few months but when they come, they are bad. But I embrace them as a sign that my ovaries are giving up! I’ll keep the Mirena & add oestrogen as needed until it runs out in 2 years and hope I’m in menopause by then. {Fingers crossed}

      I thought I was the only person looking forward to menopause because the hormones will go away!! I’m happy to have found you!

      1. Hi JJR! Sorry for the late reply – you disappeared into the spam folder! Thank you so much for sharing your story. I’m getting a coil fitted next week and was really nervous about it. You’ve given me a fresh boost and also a great way of looking at the hormones! Thank you so much xxx

  7. So pleased to find 50sense I’ve been scrolling through the internet for days trying to find an explanation for the raging anxiety, sadness and the seemingly unsurmountable agitation. PMDD explains so much, that
    No you. I’ve thought the progesterone phase of HRT was to blame but didn’t know why. I’ve read too many books which didn’t help, I’m going to speak to my gap about anti depressants. Though the next appointment isn’t for three weeks and I’ve only just started the dip. Going to work on my diet and exercise in the mean time as I know antidepressants take a little time to start working. Thank you again for raising the awareness of this debilitating condition.

    1. I’m so glad I’ve been able to help. Check out the IAPMD website for help too. It’s so good.

      I’ve now changed to oestrogen gel and utrogestone, which I’ve been told is one of the best ways to get your progesterone. I’m still on the anti-depressants, though, because I’m so scared of the progesterone! You’ve made me reassess and think about my lifestyle to help, instead. Thank you. x

  8. Great to find this site. Thanks for all your hard work. I’ve had years of struggle to get things right, it’s so difficult. I’m post menopausal but still using Oestrogel ( 3 pumps) daily and utrogestron 1 a night. I am also on AD’s. For years I took Noriday and oestrogel, but after I changed to mirena coil I had a really bad reaction and had it removed after a week. Maybe I should have persisted. I tried to go back to the old regime but it didn’t work. Since then I’ve been chasing around trying to find answers. My main symptoms were anxiety and depression and terrible brain fog and memory.The oestrogel took care of the hot flushes and night sweats. I had to swap around with the AD,s as well which was hell.

    1. Hi Maggie. Thank you for your kind words – I’m so glad to hear 50Sense is helping you. I know medical staff who had the same problem with mirena coils. It’s so hard when you try to find the answer and nothing seems to work. Have you found an answer now? x

  9. I never had any premenstrual changes but when perimenopause hit I started to feel completely awful.When I eventually found someone who believed me and prescribed me HRT the month with estrogen alone was bliss but when I added utrogestan I fell into the pit of despair, then rage and had awful thoughts about the pointlessness of me and within just three days I went out of the house intending to end it.

    My family told me not to take another one of the tablets and to find another solution becuase they couldn’t see me this way.

    The solution for me has been a Jaydess IUS which has much less progesterone than Mirena and in the two years I’ve had it, I have maybe one premenstrual day of feeling I should throw my business in the bin and thinking I’m no good at anything then it passes with nothing worse happening, thank goodness.

    1. I’ve never heard of a Jaydess IUS, but it sounds ideal. I’ve just started on utrogestan and the first month was great, but I’m having a wee wobble at the moment. I’ll give it another couple of months and see. Thanks for this, Rachel x

  10. Goodmorrning,

    Peri menopause here.. just started my journey.(50)
    January was my first ever month I didn’t get my menstruation.
    Looking back it has been a while… I was so depressed I had to go in therapy, lost my job, got medication, lost my drive, losing my mother feelings towards my children, wanted to end my live, gained so much weight and soforth..

    Here in the Netherlands if you menstruate regularly, nothing is wrong!
    GPS don’t believe in hormones and when I was so scared in January, I litterly had to fight to get an appointment with a gyn.

    For now I have been looking and looking for the right address about hormones.

    I want a bloodtest since I am sure that I can find my way back to the fearless killer woman I once was.
    I have a 16 year old daughter who finds me on the couch every day.. not at all the example I want to be.
    I showed her a picture back in 2014.. she could not believe it was me and I started crying.

    I told her that I wished for her to have the role model I was back then.

    But if you are not in your bairing years.. not a man with sex problems, a Trans in transition you don’t exist and you are told to deal with it.

    The lady who is supposed to have a menopausal clinic put me on zoely…
    Although I told her birthcontrolpills were not an option for me..
    I had to wait for my menstruation to kick inn.. because the lining was so thick it would be any day..she said, it took 2 more weeks and taking progesterone, which I still had laying around from 3 years ago.. I gained 5 kilo’s in 3 weeks time and am really upset and sad.. it took my a year to get rid of 7 kilo’s
    They told me to accept the weight, it was part of being menopausal…

    After a lot of you tube and searching I found a regiment that I think has potential.
    I had to beg for estrogel and utrogestan.. which I have been on sinds 2 weeks..
    I just started the progesterone portion and feel terribly bloated
    Had a falling out with a potential date (not a good start) and am losing interest in live again.
    The one thing I DID have the last couple of years was a sex drive.. more than ever before! Lubrication and everything… so happy!!
    Now even that is lost 😩

    How do I know if I have to much or to little off the estrogel.. and utrogestan.
    And whatever happened with the testosterone levels..

    Do I take 1 pill or 2.. do I take one pump of more.. do I take estrogel every day or cycle… there are so many different story’s and advice.

    I don’t trust anybody.. HELP!
    If someone knows a good doctor who does bloodwork as well please let me know…
    I am so so unhappy right now.

    And I am not going on AD .. that is ridiculous
    My hormones should be checked ✔ than we will feel better without AD
    That is a totally different story ..

    Warm regards and wishing all a beter life..

    L

    1. Hi Lionne. I am so sorry to hear what you are going through. It is so tough when your doctor won’t listen. Please remember HRT takes 2-3 months to settle into your body, so the first few weeks may be difficult. Hasn’t your doctor told you how many pumps and tablets to take? Please go back and ask. Your pharmacist may also be able to advise as the doctor may have written instructions that haven’t been passed over to you. You should be taking the estrogel every day with 12 days of progesteron. Continue to take the estrogel throughout this. But most importantly, please go back to your doctor or ask to see another one.

      If it helps, I have decided to take anti-depressants too as I was so scared about the effects of progesterone again. They are not cheating nor wrong, but an extra weapon in my arsenal.

      Please let us know what happens
      x

      1. Hi everyone. My goodness. I can not believe how little the GP’s know about HRT or the peri menopause. I have always had the worst PMT and the last three years my cycle has changed and the PMT has got worse and anxiety has crept in, over nothing ! Just an awful feeling of impending doom. My confidence had wobbled and my body looks like it’s literally sagging before my eyes !! I’m Only 49 !!!Just at a time when really life is good. I had no idea until I got a period at 24 days that I was going to dive head first into the mine field that is HRT. My first GP threw gel and ustrogen tablets at me and the first 14 days I felt myself uncoiling ! The flushes were less the sleep was better and so soon ! Wow 🤩 then I took progesterone .. OMG four days in and I came off the lot. I felt like my body and head was filled with fog, rage, and hopelessness it was horrendous. Never again. I called the GP and a different dr suggested patches so when I asked how I come of what I’m on and start these safely she paused and suggested I read the packet !! I was horrified. I have been watching Lisa Snowden on Instagram talking weekly in her “midweek menopause madness “ sessions to a menopause Dr and each week they tackle either symptoms, or hormones, or different HRT they cover progesterone intolerance and it’s marvellous ! Highly recommend so we can go to our GP’s informed and ask for what we want !!
        I have since started to put some money aside so I can see a hormone specialist a menopause Dr so we can tackle this together and I have to believe I’ll get help !! Maybe I’ll never find a balance but the Information I’ve come across suggest it may take time but eventually every woman can find the right balance of treatment if they persevere with the right help. I am so pleased this group exists – thank you so much for your sharing ! I’m interested to know how you were advised that the gel maybe okay to take on its own for 12 months ! I’m so tempted as it’s a bit of a miracle hormone although I do understand we need the progesterone too I just think I have enough of that already !!
        Thanks so much
        Good luck everyone – we so deserve to have our body, minds, and sex life back !
        Louise x

        1. I am nodding to so much that you say, Louise. The way progesterone makes you feel … and no-one mentions it, so you end up feeling it’s you, that you’re the one who is wrong. That’s the way I felt: that everyone else got through menopause without a problem so I was useless. I’m lobbying MPs so no woman has to pay for menopause treatment. I don’t think they’re aware at all.

          I was told by a BMS doctor that you can go six months without oestrogen, but he advised three months. We need that progesterone so please don’t be tempted not to take it. (I explain more here What is HRT)

          Thank you so much for your message. I’m sure many women will identify with what you say. Good luck and please keep in touch

          Lizzie
          xxx

      2. Hi, I’m new on here and am desperate for help, this week I have been suicidal and nearly loosing my husband 🙁
        I have been in the change for 10 years, well I haven’t had a period for 10 years.
        I have never been able to take the pill because it’s make me awful emotionally.
        I put some estrogiol on last in desperation, my question is: can I just use the extrogel every day and the mini pill for 12 days

        Thank you so much Donna

        1. Hi Donna. I’m so sorry to hear how you’re feeling. It’s something many of us on here know and you have my biggest, biggest hug. I’m not medically trained so I can’t advise you, I’m afraid, but as far as I’m aware, the mini-pill may not have enough progesterone for you. I have found a lot of relief with oestrogen gel and utrogestan – WITH anti-depressants to counteract the progesterone. It took me a long time to accept I needed ADs and it was talking to other menopause campaigners that helped. Please go and see your GP and explain how you feel. Ask to be referred to a menopause specialist, if there is one in your area, for further help and please keep in touch. Menopause is a short-term thing. It will pass xxx

  11. Uuuggghhh, I’ve been going through hell for 3.5 years, I had a rare benign tumour removed, the surgery threw my mast cells crazy, my mast cell activation or menopause symptoms (they seem the same) were awful, IBS, rashes, burning mouth, massive anxiety, flushing after eating, silent reflux. I believe I was peri for a few years before surgery, but never realised, I’ve always had irregular periods, but age 40-46 I had the most normal cycles ever, but did have a little flushing, anxiety and tinnitus (but tinnitus was from my tumour). So trying to make sense of what was going on was hard, the GPs had no idea what to do with me, getting a Mast Cell Activation Syndrome diagnoses on the NHS in the UK is near damn impossible, so I went private, that Dr, A immuniologist wrote to My GP advising her what to do. Trying to get my HRT was a horrendous experience, one said no as there was a history of clots in my family, another said I could have a combined pill when I was asking for estrogel and utrogestan, that was after a few visits and I went in in tears with my husband, I eventually found a Mast Cell aware gynacologist who wrote to my GP and gave them proper instructions about HRT, although they would not prescribe the testosterone she recommended. After 6 months I started bleeding, ultrasound scan and scrape, one side of my womb was slightly thicker, back on HRT, 12 months I started getting weepy and proper scared feeling (worse than my normal anxiety) and I started bleeding again, gynaecologist asked me to stop taking HRT while they investigated, a couple of days later my mood improved and I stopped bleeding, the ultrasound and all looked fine, but this time I had a hysteroscopy just to make sure, again all looked ok. Back in HRT, ok for first couple of weeks, but then started getting weepy, so think I might have to start cycling. The last time I was in this dark place was after having my first child (using closed drug to balance out my hormones), I had postnatal depression for 5 years. I’m changing my lifestyle, I’m eating healthier, stopped drinking 12 months ago, practicing yoga, meditation and tapping. I’ve also made an appointment with a herbalist, I’ve got so disppondent with Western medicine. I get so jealous when I think of all those women that breeze through menopause with a hot flush and a bit of insomnia for a little while.

    1. Oh Ann. Your story has made me feel so angry – women deserve so much better than this. You’ve been through a horrendous time and I wish I could give you a huge hug. It is ridiculous that women can’t get testosterone when it has been shown to have such a proven effect.

      My colleague in Pausitivity, Clare Shepherd, is a registered nutritional therapist and offers a 30-min free consultation, if you’re interested in exploring the lifestyle route further – although it sounds like you’re doing a brilliant job. Looking after yourself is the most important job we can do in menopause. If you’d like to get in touch with Clare, she’s at Your New Lifeplan.

      Also, I highly recommend Jackie Lynch’s The Happy Menopause, which is like an A-Z of menopause symptoms and the lifestyle changes you can make to help them. Jackie is also a nutritionist so knows what she’s talking about. Check her out here

      Huge hugs and please keep in touch x

  12. 👋 Hello, so pleased to have found this site.
    For those of you in oestrogel and utrogestan, you can take the Utro vaginally. The UK is the only country to not be licensed to use it this way, but it is perfectly safe, and more effective. Taking hormones orally involves the liver which isn’t ideal.
    I have discovered that I am progesterone intolerant too. I had an early, unexplained meno at age 42, which was preceded by months of extremely heavy bleeding. I was given a Mirena coil which left me feeling hideous. I had it removed and never had a bleed again.
    I have tried cycling and taking utro in different doses (100mg or 200mg) for three years and now I can’t even look at the utrogestan packaging without wanting to throw up. My GP knows nothing about HRT. He had to write to a consultant gynaecologist to ask for the definition of ‘continuous HRT’. I kid you not. It took 8 weeks for a reply.
    I have begged and cried for some support. At one point I was told he’d refer me to the local meno clinic. But when three months had passed with no appointments invitation in sight, I discovered that there is no memo clinic in my area and never had there been. My GP fobbed me off.
    I am currently trialling 50mg of progesterone daily, from a bio-identical hormone doctor I paid an arm and a leg to see in London.
    It’s my last hope. I use 2 pumps of oestrogel daily. I last used utrogestan in December and January and it resulted in me locking myself in the bedroom while I sobbed the days away. This isn’t ok. We need more understanding and no more one-size-fits all approaches to hormone dosages. Why is utrogestan only available in 100mg or 200mg tablets?
    My heart goes out to all of you struggling with your hormonal imbalance, insufficient HRT preparations and ignorant and dismissive doctors. If you want to chat to others going through similar I recommend the menopausematters forum. Lots of utrogestan and prog-intolerant women there.

    1. Menopausematters forum is great. There is so much help and advice there. I also like Mumsnet (I know…) So far, utrogestan seems to be giving me one really bad day, but it’s early days yet so I’m waiting for a few more months to see how it goes. I’ve heard of many others who have had trouble with the coil, too, so I’m hesitant to try it. If this doesn’t work, it’s cold turkey menopause… x

  13. I am almost 52. Started HRT 2 years ago. Estradot patch (other patches seem to disperse too fast for me). I’m in the US so I get the patches “offshore”. With the shortage recently went to an online doctor.. two actually. The first put me on bi-est compounded cream and a vaginal progesterone cream. The cream is fantastic in terms of symptoms but illicits immediate bleeding. As soon as you use the progesterone cream.. nightmare. Mood, depression, harmful thoughts, unmotivated, brutal migraines and dizzy spells, massive weight gain. So then I see another doctor who puts me on oral and norethindrone pill (low dose birth control progestin). No…all the symptoms come back. I used a progesterone oil for a while which is GREAT for the bleeding and it has less of the side effects but still there BUT.. no uterine protection.

    I never really had PMS issues per se? Maybe a day or two before. I had IBS D very very badly around my period which may have been my manifestation but I more likely suspect that I have never had high levels of EITHER hormone and all this addition is likely way way way over my “natural” state. I did use estrogen unopposed for a wihle and cycled totally normally like I did pre-perimenopause. Was about 10 months of near normal. Now that’s not possible but the progesterone issue is just brutal. I had NO idea about the body aches/muscle pain issue. That’s a massive complaint I have (I spent $400 a month at least on bodywork to keep me mobile at all). I would probably not do a coil. I had an IUD in my early 20’s which scarred my uterus and led to the extreme premature birth of my teen. I would definitely be nervous to go that route again (and thus far, my experiments with vaginal progesterone at least has shown that the effects for me are still totally systemic.. using in the vagina doesn’t mitigate the side effects at all).

    I sometimes pray there’s a uterine issue so they’ll HAVE to remove it. Then I could just do just the estradiol and be able to live like a normal person.

    I am thrilled to find this blog and another one (no offense) just yesterday. I am in the US as I said and both of you bloggers I found discussing this are in the UK.. I’ve NEVERRRRRRR seen this discussed in the US.. ever. I’m pretty sure if I told a doctor they’d look at me like I had 12 heads and tell me I needed depression meds (last in person doc I saw said that if what he prescribed, medroxyprogesterone and a strong patch didn’t work it wasn’t menopause it was depression and I needed to see a shrink.. sigh). Thank you for sharing your experience, it’s sooo validating!

    1. Another blog? Shame on you, Dawn 🙂 It sounds like you’ve been through the wars, though. I am on a new HRT – gel and utrogestan – and so far have one bad day a month, which is great compared to previously but it’s still a horrendous day when I feel the world is ending. Many women have told me they’ve gone the lifestyle route because the progesterone was so bad – and that includes a few menopause specialists, too. I think there comes a point where you have to decide if the HRT benefits are worth it or not… I’m getting close to that point myself.

      Thank you for stopping by and I’m so glad I’ve been able to help you x

  14. Hello,

    Just happen to stumble across your page. I normally don’t comment but I wanted to just let you know about my experience with the kyleena (a low-progesterone iud, similar to the Mirena coil.

    I had gotten the Kyleena as a form of birth control and was told it was localized and was the lowest hormonal option out there. I was super excited and the initial process went great. About two-three months after, I got very depressed. It felt like this giant cloud over me that I couldn’t escape. I’d suffered with anxiety and depression my entire life, but this was another story. I googled the kyleena and found stories just like mine- and new evidence on why iuds/coils need to be tested more, as they don’t appear to be acting just localized. I ended up getting the kyleena removed, though all my doctors told me it couldn’t be the cause. I can’t lie, I also took other measures to calm down my life, but I felt visibly better after the removal. My partner, who was supportive albeit not very knowledgeable, would comment on the difference my mood had.

    As a result, I know recognize that I am sensitive the progesterone and no longer feel crazy when I tell people that the week before my cycle, I truly do not feel like myself.

    I just wanted to share my story to highlight that iuds/coils don’t always act localized. Obviously discuss with your own doctor and see what works for you (many people find the Kyleena fantastic). For me, I needed to see posts like this, and articles like yours, to realize I’m not crazy, there is a reason for this and just because it’s under-researched does not make our experiences invalid- it means we need more research and more compassion.

    Thanks for hearing me out!

    Sam

    1. This is great advice, Sam. Thank you so much. Several women have said they can’t cope with the progesterone in coils, neither. If this HRT doesn’t work, then I’m not going down that route. I’d rather take anti-depressants to help with my menopause moods than risk feeling as if I wanted to jump under a train again. I hope you’re getting some good help xxx

  15. I have been suffering with lots of the symptoms of Progesterone sensitivity and had no idea that this was even a thing, I thought I was just depressed. I’ve been using gel and utro for a while now, going to try using the utro vaginally to see if it helps. Thank you for such an informative blog, hope you manage to get yourself sorted on a regime that works for you.

    1. I’m so glad it was of help. You’ve brightened a bad day for me at the end of my own progesterone cycle. Thank you so much for taking the time to comment x

  16. This blog is so validating for me. I live in the U.S. and have been going through the same things everyone here is describing and to know I am not so alone. I haven’t been able to work since November when I started feeling really bad and have just been spending and spending in a desperate attempt to find something that works.
    I am wondering if you think that the bad reactions can be due to more of a timing issue. I have read a lot suggesting that PMDD is more of an intolerance to fluctuations in hormones than the actual hormones themselves. This is why SSRIs help. They help our brains manage the fluctuations better somehow. This makes me think that patches might be better because there would be a more gradual dispersal of the hormones? I wish there was a bioidentical Progesterone patch or vaginal ring. I went off ADs at the beginning of last year and in April my expensive holistic doctor started me on 50 mg micronized Progesterone when I had some sleep issues. She didn’t test my levels or give me Estrogen at the time, though, and I think she was mistaken there and set me down a bad path.
    The progesterone helped with sleep some at first but made me moodier. It seemed cycling it was worse so I tried continual and that may have been a bit better. Then, in October, I started feeling terrible with terrible anxiety and insomnia. My doctor had me increase and try 100 mg Prometrium (that’s like Utrogestan in the U.S., but I’m not sure it’s as good). I felt even worse. She added one click of a compounded estradiol gel, it’s only .125 mg per click. My psychiatrist suggested trying a treatment called TMS and that was horrible too. I won’t ever know if it was the hormones or the TMS but the next few months were awful.
    I stopped the progesterone in December but stayed on the Estrogen. Acupuncture and the herbs she suggested seemed to help. I felt a little better and continued getting periods for several months. I tested my hormone levels and they were fairly balanced but cortisol was very high from morning to evening. I started trying to find another doctor. One doctor sounded promising and then $600 later dumped me because I think she was too busy and overwhelmed and I think my situation was too complicated for her and she didn’t know hormones well enough to figure it out without spending time doing research. My OB/GYN wanted me to do a patch and the Mirena coil and I feel the same way about that as most of you here. Once it’s in, if I need it out ASAP, I don’t want to be stuck waiting three weeks to get it out. I’ve read too many horror stories.
    After my cycle stopped for two months I decided I would try taking some progesterone again. I took a 50mg capsule for two days, and yep, felt worse. I tried doing some progesterone cream in a tiny amount and that felt no better but I stayed on for 9 days and got a period. Even after my period starts now I feel bad. It used to be that I’d have poor sleep and anxiety before my period and then feel better a few days in. But now it just turns into a weird feeling of dizziness, depression, and yuckiness.
    I just paid $375 to meet with a naturopath who specializes in BHRT to get a super low-dose prescription for a 10 mg progesterone suppository which I am splitting in half to start. I started it two days ago and haven’t felt too good but I am thinking I might actually need a higher dose. Today I felt good on it for about 6 hours and then it seemed like it was wearing off or something and I started feeling more anxiety and depression. I don’t want to be administering it 4 times a day so hopefully I will up the dose over time and be ok and have it last longer. They were expensive, though, $65 for 14 suppositories. I’m spending my future to get relief in the present
    I was really hoping to not go back on an SSRI but I don’t know if I will make it through another winter with my sanity intact, not that it really is now. I’m giving it a few more weeks/months and will probably start on a super low does liquid Prozac. Some of us just need that, I guess. I was on Prozac and Wellbutrin for over 13 years and gained 60 lbs. in that time. I think my perimenopause was starting even back then and wonder if HRT could have prevented years of being on unnecessary meds. I think they helped mask a lot of the symptoms of perimenopause so I didn’t even know where I was in it. I kind of knew because I had more irregular cycles and some mild night sweats and hot flashes, but didn’t think much of it. Since November I’ve lost half of my weight gain. It may have been due to anxiety and depression but I think the ADs cause my metabolism or eating to go off track somehow as well. Also, I don’t like being on ADs because they are so hard to stop for me. It takes me months. I had to take brand name Wellbutrin to counter the side effects of the Prozac and that was quite costly.
    Well, thanks for reading my long-winded story here. I hope it helps someone else feel not so alone in their struggle and that we can get through this together.

    1. Thank you so much for sharing your story. It’s amazing seeing all the figures for how much you’ve spent. We shouldn’t be having to pay so much – especially when the treatments often don’t work. I do hope you find some relief and again, thank you for sharing x

  17. Has anyone here tried the Utrogestan vaginally ? I notice a few had mentioned trying. Like many of you I absolutely dread the progesterone part of the hrt cycle, largely due to the total lack of energy (I’m lethargic at the best of times but now so much that I slur like a drunk) and general low feeling. It renders me incapable – starting to feel unemployable..
    Therefore I’m curious whether the more targeted approach reduces symptoms. I considered the coil but it couldn’t be fitted (uterus prob) and anyway I don’t like the thought of being stuck with it if it doesn’t suit me.
    Thank you for raising this- I’m relieved to have found this forum!

    1. Glad it helps in some way, Sarah. I’m still trying to get some answers on utrogestan being taken vaginally myself. If I find out, I’ll let you know x

      1. My doctor told me that prometrium onserted twice weekly with patch change is all that is needed when using vaginally

        1. Thanks that’s interesting – I wonder what doseage and wonder how much the side effects might be reduced. I have utrogestan- might just have a go as I think they’re suitable for use that way, albeit unlicensed.
          I’ll keep you posted !

  18. So pleased to have found this- so much talk at the moment about HRt which is great , but nowhere is there much going into the side effects/potential stumbling blocks.
    Been on hrt for 2 yrs, started with the patches (always dreaded progesterone weeks)and now I am trying estrogel and 100mg utrogestan daily route- 3 weeks in and I’m ready to abandon it due largely to the overwhelming fatigue. I’m not a lively person at the best of times and this is like the final nail in my coffin. Zero energy and feeling addled – at a time when i need to bust my a*** to work hard and retain my job I’m feeling unemployable. A few people here have mentioned trying utrogestan vaginally – can anyone report back on whether this helped alleviate some side effects eg tiredness? Sounds plausible as I understand the tiredness is due to a byproduct of the progresterone when it’s processed in the liver. ….might be wrong.
    It’s so extreme- and I can’t have a coil thus starting to feel like hrt might not be an option after all….

    Thanks for any feedback!

    1. Progesterone being processed by the liver is one of the reasons women like us struggle to take utrogestan. I’m struggling to get a GP who can discuss vaginal utrogestan – even getting utrogestan was difficult enough. If I find an answer, I’ll let you know x

      1. Hi, this blog is so interesting, thank you. I’ve always felt a hostage of hormones. Have had low mood, anxiety on and off since puberty. But no problems with fertility, have 3 kids and no pregnancy problems. Symptoms became v bad a few years ago during peri menopause, aged around 45. I felt like I was drowning was irrational and anxious had suicidal thoughts and brain fog and almost ended up divorced. I now think this was pmdd. I knew I had to stop the monthly rollercoaster, went on a progesterone pill which was ok, then was switched to Zoley which is a more oestrogen based one I think. After a month one night I started to feel numbness and tingling which progressed next day all down one side of my head & body. Ended up in A&E but symptoms subsided they were happy I wasn’t having a stroke. I was referred to a neurologist and had a brain scan, all normal. So tried oral hrt, femostan but within a few days the numbness returned. Was then put on anti-d, venlafaxine which has been great for mood. Have also been taking vagifem. After a year without any periods I recently wanted to again try hrt for overall health benefits, brain fog and for libido which fell to zero. Went to a menopause specialist who said problem was likely with oral hormones and prescribed oestogel and utestrogen tablets. After one day I began to get the tingling /numbness again and had to stop. Second specialist says I can’t risk taking oestrogen again and we’re looking at maybe starting testosterone. They say I am hyper sensitive to hormone fluctuations and worried reactions could trigger clot or stroke. Other than hormonal problems I am v fit & healthy with no lifestyle issues. Would greatly appreciate any insight, at 49 the rest of my life without some hormones seems v difficult

    2. Hi Afazza

      I’ve tried so many ways with the Utrogestan and am now taking 200mg vaginally for 14 days. I hate to say but I still feel utterly dreadful. The first morning after taking it the night before and I literally cannot function. I have a really physical job and am self employed so I cant even call in sick which is all I want to do for the 14 days that I take it. As soon as I have the break I feel a lot more like my old self. Im at my wits end and just don’t know what to do anymore. I know that HRT protects us form so many things but im now convinced I was better on the anti depressants as I was a lot less anxious, angry and argumentative. I had no libido but I haven’t had one for years anyway. Just so sick of it all. x

      1. Hi Debs. I take anti-depressants with the utrogestan. It’s not ideal, but it seems to work for me. The meno specialist wants to try a coil, but I’m wary after all the bad press at the moment. Hope you get some relief soon xxx

  19. So glad to find you. I’ve been on HRT now since November last year. It has taken me a while to stabilise and I’m still struggling with swings in my mood. I take 75mg Evorel patches with 2x 100mg of Utrogestan for 10 days and I’ve added 0.5ml of Androfeme. I’ve always known I was sensitive to fluctuations in hormones and suffered dreadful PMT but didn’t know about PMDD until my niece was diagnosed and my sister pointed out that she thinks I have it too. It all adds up. Even with the HRT and paying for a private consultant with PMDD specialism, I’m not there yet. It would seem that because I am still producing natural hormones, my HRT can sometimes be too high, when my body produces a good level of hormones and sometimes just right.

    I have personally found that my mood swings now are more prevalent after my bleed, and I’m unsure why. I also don’t know whether I’m sensitive to progesterone or just damned sensitive to all fluctuations, although I had a particularly bad day the day after I stopped my utrogestan. I may try it vaginally, which my consultant said is fine, but only 1 tablet not 2, which will make them last longer anyway lol… and see if that helps. I get really good days and I would just love more of that, in particular more predictable moods.

    1. Hi Abigail! I find my moods were worse after the bleed, but they seem to be settling down now with oestrogen gel and utrogestan. Can I ask if your consultant said it’s okay to use 1 tablet? You have to make sure you get the right amount of progesterone x

  20. Since reading some recent responses I have been trying 100mg vaginally at night. I read some work published in Australia which said 100 mg 3x a week would be enough. Similar to what Sue mentioned. So far I’m 3 weeks in and the side effects are far less, much more manageable , feel the positive effect of estrogen and little of the negative mood/mind effects I had before from utrogestan. I do feel a little tired the next day but nothing like before and I’ve had a couple of light bleeds which I put down to changing the regime. I’ve also gone down from 3 to 2 pumps of estrogel.
    Anyway I’ll continue with this for a little while longer and will pay for a scan to see if the progesterone is doing what it’s meant to in a few months time as it’s so low a dose. My gp is supportive albeit reminds me this is way is off license.
    I’m just enjoying a consistent mood for the first time in a long while and having a bit of energy left to drag myself to the gym ….perhaps it’s the calm before the storm, we shall see.
    I’ll keep you all posted on progress in case anyone finds my experience helpful! Xx

    1. Oh Sarah, I’m so happy that you have found a method that’s working for you. That’s wonderful to know and thank you for sharing your story to give others hope xxx

  21. I am 48 and peri (still having periods). My doc prescribed oestrogel and Utrogestan 100 but told me to take 1 tablet of Utrogestan for first 25 days then 3 day break then start again. I now think this is wrong and I should have been told to do the 12 days on 2 tablets. The thing I am struggling with is stomach pains, bloating and some constipation which I think is linked to the Utrogestan – it has been going on a couple of weeks and I am about 4 weeks in to taking hrt so I know it’s early days. I will phone the GP and ask what to do but I am pretty sure I already know more than them from some things said.

    1. Hi Jo. Quite a few women take Utrogestan for 25 days – there’s less withdrawal bleeding this way. It can cause constipation, too, so concentrate on upping your fluid intake and fibre, if you’re not already. Bascially, the Utrogestan slows down your digestion so all that matter sits in your colon longer getting harder and dryer. But like any HRT, if you’re not getting along with it, talk to your GP. x

  22. OMG. I turned 50 in December and April of this year marked a year without a period. My irritability and sensitivity had gotten to the point I didn’t want to go out. It was the memory loss that finally prompted me to try HRT. I was given a .375 estradiol patch to start, which made me sick. After Dr. told me to cut it in half, I experienced the most amazing change in my mood that i have ever had. No anti depressant or other pill had ever given me back my life like that estrogen. But a month later, I had to start the progesterone. I was prescribed 100mg of prometrium capsule. Within a week I had spiraled into the worst depression and anxiety I’d felt in decades. I had to stop taking everything. It took a month to start feeling better. But then the hot flashes started and they were worse than I’d ever expected. Long story short, I ended up back on the estradiol. And a few days ago I started a much lower dose of progesterone (25 mg.) I’m now 3 days in and I am already having bad anxiety and depression. I just want to eat and stay home. I don’t know what to do short of getting a hysterectomy.

    1. Hi Silly Rabbit. There are alternatives for hot flushes, if that was the main symptom bothering you. Anti-depressants get frowned upon, but they can help and I know women who turned to them when they had trouble with progesterone. It may just be your body adjusting, but please don’t keep feeling this way. Go back to your GP and ask for a follow-up with a meno specialist x

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