Progesterone Intolerance, PMS and PeriMenopause - Hysterectomy?

[Sticki]

Ive been diagnosed with Progesterone Intolerance and looking back have had symptoms since my teens. I really struggle with PMS and it has been getting worse over the last 5+ years. I am now 45 and have had regular periods.

I was prescribed ADs by my GP which didnt do anything for the anxiety. After research I self funded to see Prof Studd and have been taking Oestrogel and Testim for 8 months. I am on a regime of taking the progesterone pills every second month for 7 days (the minimal possible). The medication has made my natural cycles longer but my PMS symptoms are still awful (for 2+ weeks per cycle) and when I have to take the additional progesterone I feel completely horrendous for ages. It is really affecting my life.

I cant see any option at the moment apart from a Hysterectomy taking my ovaries too. Its a long recovery time (even if keyhole) so I need to know if it will definetely work! In theory it must do if I dont have the ovaries to secret the progesterone. Any experiences?
Thanks

Have you made any lifestyle changes to try to manage the PMS? I don't mean to minimise the issue- it sounds awful- but there are some ways possibly through food, supplements and exercise that may reduce symptoms, Have you had a read of the Women's Health Concern website on this issue?

What are your worst symptoms? Is it moods or physical symptoms like sore boobs, etc?

Maybe you'd not need a hysterectomy- could they remove your ovaries?

Have you thought about seeing another gynae such as someone at the Chelsea & Westminster meno clinic? (or someone other than Studd?) I think you need medical experts, not other women's experiences.

Thanks Polly for replying, I appreciate it. Yes, I do think I need medical experts but was looking to see if anyone else has had similar and where they have gone for advice.

Yes, I have done loads of lifestyle changes (should have mentioned earlier but brain fog) - supplements, no sugar, carefully managed blood sugar diet, vitamins and minerals etc. I exercise alot which does help a bit.
Nothing, really reduces the symptoms to a more bearable level. Symptoms are - Anxiety, paranoia, wish for social isolation, negativity/lack of enjoyment, brain fog, achy joints, insomnia, headaches, pelvic pain, constantly tearful, lack of concentration, grumpy, bloating and angry. A huge thing is the level of exhaustion making me feel overwhelmed by everything.

I will push for a referral to a clinic, my gp isnt helpful.
Thanks

I'll Pm you.

Hi - I completely identify with all that you describe here - I have been to professor Studd - but now seeing local gynaecologist who fitted a Mirena coil in January - it took a long time to settle down and for 3-4 months I was really well but my symptoms have now returned with avengence - just don’t know that to do - for last month have had a migraine every 3 days and feel pretty bad in between - seeing doc again tomorrow prob to get coil removed as I think got too much progesterone now - have you found anything that worked ? Am seriously considering hysterectomy option now

Hi
I saw Prof Studd too. I have been taking oestrogel for 8 yrs now with quarter of a tablet of cyperterone acetate. I take no progesterone and it works but i worry and have said in past to him arent i supposed to take progesterone whilst still got a womb etc? I tried to stop the hrt yrs ago and the migraines were off the scale. Are you still taking meds for this?

I realise this is an older thread - are any of you still around?

OP I could have written your post!

I have also been attending the Studd clinic and am on the same regime as you with Utrogestan only 7 days every second month. He's agreed to continue this for the next 6 months then do a scan and reassess. I'm only 3 months into the new regime of not taking the Utrogestan every single month, and to be honest it has helped somewhat.

I would also be a candidate for hysterectomy but it's a big decision and I don't think I am ready to make it just yet.

How are you all getting on?

Hi Hippospot
Yes, Im still here!
I wasnt quite ready for a hysterectomy in January when I wrote the OP. But my Consultant (I moved from Studd) suggested testing the effect of a Hysterectomy using meds (and 3 monthly Utrogestan) and this started in the spring. This has proven to me that my hormone issues are all related to the progesterone intolerance which is quite severe and a hysterectomy would solve it, and the operation would be worth it. I feel now (when Im not taking the progesterone) great, normal and stable. I realise how awful I have felt every month, for at least 2 weeks, since my periods started 30 years ago.
However, I was able to see this consultant using BUPA but they wont fund the hysterectomy, despite it being the recommended treatment path by the Royal College of Gynaecologists and Obstetrics. I have just got a Gynae NHS referral for Jan 2019. Fingers crossed for this.

It took me a while to get the levels of Oestrogel and Testim right, and I didnt feel the benefit of them before I blocked my own progesterone production with the other meds.

The operation is a massive decision, I agree. Good to hear from you! Good luck.

Hi Sticki

Please do give us an update after your referral!

I would love to know how much a hysterectomy costs, if anyone knows?

I have Bupa too although I was pretty sure they wouldn't pay for this - which clearly they won't for you either :(

The gynae I saw last week (Studd's colleague) said no woman rushes into the decision to have a hysterectomy but most of them are pleased they did it and most of them regret not doing it earlier.

For me, taking Utrogestan is like flipping a switch (depression, anger, anxiety, cramps, sore breasts, bloating) and it is such a clear cause-and-effect that I am certain I would be better off without needing to take it. PMS threatens my marriage every single cycle. I'm so sick of it.

No matter how much a hysterectomy costs, I am certain a divorce would cost more.

Hi.... just wondered if anyone is still around on this thread? When I started reading it, I wondered if I wrote it. What happened? Did you all go ahead with the op? Would be great to hear from you

Same here! As in have read this today and hope it’s still open. I feel exactly the was described above, I am however 29, so the possibility of getting a hysterectomy is non existent. Hoping to get referred to C&WM later on this week...fingers crossed.

Hi Sticki

Hope you’re ok! I was so interested in your post as I’ve been suffering with this progesterone intolerance all my life and it’s been horrendous. I would love to ask you about your hysterectomy if you don’t mind as I am planning on having one privately and if you recommend a particular consultant? I’m living in London. I wondered if you felt it was worth doing and had made your quality of life better. Would love to chat as it’s so rare to find someone that can help. Thanks so much Fiona

@HELLO12345678912 The OP posted 2 years ago so might be better to ask again with a new thread of your own?