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[Perinowpost]

Hi all

8 weeks ago I had a hysterectomy for extreme progesterone intolerance.  This was not a decision I took lightly as it is a major operation.  However, for the last 11 years I have systematically worked my way through every progesterone available on the NHS, as well as trying a  couple of private options.  Each and every time I stuck with it for the recommended time advised: I tried the mirena coil for 6 months, everything else for 3 months including tibolone.  Despite this it never got any better for me.

The symptoms I suffered on prog include: weight gain, bloating, joint and muscle pains, itchy skin, eczema in my hairline (i’d never had eczema in my life before), sore bladder and headaches, but most debilitating of all were the mood swings.  When the time came around each month to take whichever one I was on at the time I would fear for my marriage.  The prog literally changed my personality.  When I finished taking it the withdrawal was just as bad if not worse - literally like drug withdrawal.  Then slowly I would return to my old self - until next time.  I couldn’t tolerate it continuously either, believe me I tried.  I took a fortnight off work and managed to get to 12 days on utrogestan, by this point I was so spaced out and confused I fell off my bike on a fast road and nearly killed myself! Never again.

The second time I consulted privately the meno doctor I saw was particularly helpful and she explained to me that about 10-20% of women are affected with EPI as badly as me.  It is not surprising really. I was never able to tolerate the contraceptive pill (including the pop) and suffered a bout of postnatal depression (which cleared up on its own after 6 months) after my first baby.  I did not suffer with PND with my 3 subsequent pregnancies, and have no mental health issues.  My problem was hormonal sensitivity.

What to do then.  The bleeds in my late 50’s were becoming tiresome enough as well as making me anaemic, but I just couldn’t carry on any longer with the mood swings - my body was sending me a message. 

So, I had my hysterectomy by laparoscopy, as I have said just 8 weeks ago.  Unfortunately for me I did have a complication which resulted in me having to have a second surgery 3 days later.  Having said that once that was sorted I have not looked back.  To say I am overjoyed to be off the progesterone roller coaster is an understatement.  Every day since I have felt the same: calm, relaxed, happy.  Once the complication was sorted I found the recovery easy.  I have 4 very small scars, 2 of which are very low down and all of which I think will hardly show in a year’s time.  It’s a small price to pay for feeling well.

I did not have any disease before my hysterectomy: no fibroids, polyps, adenomyosis, hyperplasia (despite being on minimal vaginal prog for a long time) or anything else.  However, prog intolerance is such a debilitating illness I feel it merited my op in its own right.  Unfortunately, however, it is unlikely this will ever be offered on the NHS to many that need it due to the cost issues.  I have also been met with lack of understanding from a few people I have explained why I have had it; it is as if they could understand physical disease but cannot grasp anything else. 

All that said, I feel as though it is the beginning of the rest of my life, and I wanted to share my experiences with anyone here that it might help. 

Much love to you all x

[Flossieteacake]

Thank you for sharing your experience with us. I can understand why you chose to have a hysterectomy and I am so pleased to hear you are in a better place now.

[Clovie]

Wonderful account.
Thank you.
I too am late 50s and still have bleeds - Ive been severely anaemic because of the constant heavy bloodloss.
I too am progesterone intolerant - and just about getting through with 100mg utrogestan daily (since my bout of severe anaemia 6 months ago) Still having regular predictable bleeds however, despite this regime - my periods have never stopped so the HRT is not strong enough to over ride my own hormonal cycle.

I'm so pleased that you have had a successful outcome - I myself have contemplated a hysterectomy but have been afraid.
food for thought indeed...

[Mary G]

Perinowpost, that is great news and a very wise decision. 

Progesterone (particularly Utrogestan) intolerance is the most debated problem on here and it's worth remembering that you don't even have to be progesterone intolerant to have problems with that stuff. 

Too many women make the best of a bad job with the progesterone component of HRT but there is a limit as to how long you can put up with it.  The late, great, Professor Studd was a great advocate of hysterectomies and I have to say I have yet to meet a woman who has regretted it.

You are late 50s now and I know from experience how debilitating bleeds are when you are older.  I was in danger of becoming the oldest tampon buyer in town before I switched to a continuous combined regime - I'm 62 now!

So no more progesterone or bleeding for you - great stuff.  I'm sorry to hear about your setback but delighted to hear you have made a full recovery now.

Thanks for the info and for the success story!

[annedenmark]

I'm really pleased it's worked out for you Perinowpost, and I entirely get why you've taken such a step. It's a tragedy that so many women are suffering from progesterone intolerance, and to add insult to injury it's not always taken seriously.
Good luck and onward with the rest of your life!

[SarahT]

Thank you for posting this.
I totally understand and support your decision, whilst aware many may not be able to comprehend what you had to take such action.

I am currently trying to overide my own cycle by increasing my hrt. Am now taking Ads due to worsening mood swings. Like others this is a course I have considered for.myself.

I wish you well

[CLKD]

 

Feet up.  Rest.  Tnx for the update. 

[Kathleen]

Hello Perinowpost.

Thank you so much for your very interesting post. I am so pleased that you finally have the solution to your prog intolerance.

Your response to the birth control pills and episode of PND clearly indicated your hormone sensitivity and it is tragic that your journey with HRT had to be such a tortuous one.

I wonder if other women who struggle with HRT are also hormone sensitive but not necessarily to progesterone? 

When I first became a patient at Newson Health I was allowed Oestrogen only for three months and my doctor assumed that I would feel fantastic without progesterone but I didn't. I can't say I've noticed much difference when taking prog and I never had any problems with the pill or around my pregnancies, infact I really good!

Apparently 25% of women suffer at menopause and some research into why would be most welcome!

Once again thank you for the update and wishing you well.

K.

[Nas]

Glad to hear you are finally free of progesterone. I think once women have tried all the different types, you really have to think outside the box and start consider a hysterectomy ( which you did).

Did you have it done privately or on the NHS? You are right, the NHS will make you jump through many hoops, before even considering a hysterectomy; shocking really.

How many women can actually afford that type of surgery privately anyway?

Rest up and take the time you need to recover. 

[CLKD]

How much does it cost these days? 

[Perinowpost]

Thank you all for your lovely supportive replies.

MaryG - "I was in danger of becoming the oldest tampon buyer in town"  I love it.  Yes it's such a relief to never have to bleed again.  Also, re Prof Studd he really knew his stuff didn't he bless him; and you are right I do not regret it having it done.

Nas - "Did you have it done privately or on the NHS? You are right, the NHS will make you jump through many hoops, before even con -idering a hysterectomy; shocking really." It is shocking but I think it all comes down to cost; the NHS is on its knees as we know which just doesn't bode well for something which is not deemed a necessary op.  In answer to your question I did not go through the NHS, I live in Spain so come under their health system.  DM me if you want anymore information.

Kathleen - you posted a while ago about lifecodeegx (hope i'm allowed to mention it) in your quest to get to the bottom of your issues.  I did not pay for the service but followed them on insta; they suggest that prog intolerance is all down to a gene.  My science is not good enough to know if this is the case but just to say I would not be surprised.  It's very interesting isn't it?

CLKD - I did enquire in the UK as to how much a hysterectomy costs (before I had my op in Spain), and was quoted between 7,200K and 8,500K.  This is going privately of course and is a lot of money, and so sadly puts it out of the reach of many.

Thanks again ladies for all your good wishes, I really appreciate it x

[meno-mel]

Thank you for posting this.

It's something I've thought about too, but like you say no hope on the NHS.

I'm another one who has always been intolerant to hormone pills in general and pregnancies were awful in the same way.

I've been told my hormonal depression during pregnancy didn't exist, nor does my imagined intolerance to the mirena coil and POPs,

Then I got to menopause and my GP told me no way was I intolerant to northisterone, noone is (yes they are).

I know how hard it is to be believed, that this thing flicks a switch and you are booted out of your own body while it gets taken over by someone very angry and self hating.

The worst is provera, I honestly think my husband would move out if I came home saying I was giving that drug another go. I am a danger to myself in that state, no doubt about it, yet they dismiss it as nothing.

[CLKD]

GPs need heads down loo with flush pulled.  . They should listen to their patients so that a wider view of knowledge is gained!

That cost sounds a lot, 1 could go round the World on a Cruise !   .  However, it's probably 'about right' for the technology etc involved with surgical interventions.  Because we have the NHS we have no idea what treatments might cost which of course, will vary across England.

How R U feeling this morning Perinowpost?

[Perinowpost]

Meno-mel - Noresthisterone was the worse one for me.  The problem is the people who are telling you prog intolerance doesn't exist are not specialists in the meno field, they are usually GP's or nurse practitioners so largely they are not aware of it unless they've had the training.  Strangely enough I felt really good in my pregnancies once I got over the first 3 months awful morning sickness.  I hope you find something you can tolerate. 

CLKD - I feeling good thank you

[Clovie]

Thank you for posting this.

It's something I've thought about too, but like you say no hope on the NHS.

I'm another one who has always been intolerant to hormone pills in general and pregnancies were awful in the same way.

I've been told my hormonal depression during pregnancy didn't exist, nor does my imagined intolerance to the mirena coil and POPs,

Then I got to menopause and my GP told me no way was I intolerant to northisterone, noone is (yes they are).

I know how hard it is to be believed, that this thing flicks a switch and you are booted out of your own body while it gets taken over by someone very angry and self hating.

The worst is provera, I honestly think my husband would move out if I came home saying I was giving that drug another go. I am a danger to myself in that state, no doubt about it, yet they dismiss it as nothing.

I too had pre-natal depression.
And post natal depression
And I have always had PMT

Apparently - you are much more likely to be progesterone intolerant when you take HRT if any/all of the above applies to you, and much more likely to be depressed at peri and post menopause.

Studd talks about 'reproductive depression'.

I certainly AM intolerant to Progesterone. In a big way. It's like flicking a switch which makes me sad, angry, despondent, morbid.
And then after THAT hits - - I have the joy of feeling like I have to slowly and laboriously crawl out of a deep dark hole... every time.

How can anyone dispute the existence of progesterone intolerance?    Insane.