Progesterone intolerance and menopause

[Rainy00]

The first part is sage advice re HRT and progesterone intolerance; the second part hoping to get some advice re hysterectomy.
It took a long time for me to even know about progesterone intolerance. I was always made nauseous by the pill, had headaches and PMS and then migraines in my thirties, a brief respite before the hell of peri menopause hit. I was tired, bloated, angry, depressed, upset, short tempered and tearful. Sleep was often disturbed. I felt I was going mad. My husband wasn’t supportive and my parents died which didn’t help. What eventually returned me back was HRT. Initially partly useful and then I saw John Studd and his regime made a big difference. Years later though I felt I was getting worse again and eventually got a referral to Westminster and Chelsea menopause clinic. They changed my progesterone to the vaginal pessary kind which instantly helped.
All this took 15 years. I really hope I help some ladies to get to this route much much quicker. Estrogel and vaginal utogestan.
My husband saw prostitutes and gave me herpes which has mostly been dormant. Unfortunately herpes is made worse by progesterone and this year I have had it every month I tried to take it. I am on the waiting list for a full keyhole hysterectomy. My mother died of endometrial cancer so I recognise the added benefit of losing certain cancer risks. I have been waiting so long for this but recently doubt is creeping in. If I am honest with myself, I am reasonably stable now and nearing 60 with a grown up son and the same stoic marriage with no sex. I am aware that this is the time to enjoy life to make up for a lot of unhappy years. I can control Herpes with anti virals, ( and when I’m happier it may go dormant again), and I hardly ever get migraines these days. I have gone vegan and have a very anti inflammatory diet but still struggle to lose weight. I dread finding it harder after a hysterectomy and worry about the chance of creating more problems. In short what would have been brilliant 15 years ago might not be the right decision now, even though I fought so hard for it. Anyone regret having a hysterectomy in later life?

Thank you for posting this.
Wow you've been through a lot
I'm certain reading this will help others. So useful.
Can't help with the hysterectomy advice but didn't want to read and run.
Good luck to you OP

I’m sort of four years into your journey with peri then HRT and just about to try vaginal utrogestan. I’m really sorry about what you’ve been through, it’s sounds awful. My consultant also diagnosed me with progesterone intolerance and said I should have a hysterectomy but that it’s really hard to get one these days on the NHS without suffering for much longer than I have so far. I don’t know what to suggest - I think if I were you I’d have the op but like you say, what’s right for someone in their early 40s might not be right for you now. Is it mainly weight related concerns? Why else are you hesitant?

Thanks for your reply and I’m glad you are on the right course! Regarding the hysterectomy I’m on the list for- I wonder if I really want to give more life to recovery time, and the risks may be small but real: “ Long-term effects of hysterectomy on the pelvic floor that should be considered in surgical decision-making are: pelvic organ prolapse, urinary incontinence, bowel dysfunction, sexual function and pelvic organ fistula formation.”

Wow, yes, that’s quite a list of potential side effects - I have t got so far along so haven’t really read up about it. I had a rectocele prolapse after my son was born and had corrective surgery which was mostly successful but not completely so I wouldn’t be keen on that reoccurring. It’s a difficult one - the heroes attacks sound pretty grim but only you know if you can deal with them. My consultant has allowed me to have my progesterone withdrawal bleeds every other months so that at least I’m not spending most of every month feeling either hideous or bleeding, could you talk to yours about that?

*herpes not heroes obviously

I can see your dilemma.

The first thing is do you need to carry on with HRT at all? Have you thought of slowly coming off it? (Not saying you ought to, but it's the obvious question.) The issue is only there because of HRT.

Have you ever tried the Mirena coil? Another option.

The risks of a hysterectomy are real but very small and a lot always depends on the skill of the surgeon.

You aren't that old to have the operation. I've known of women in their mid 70s have this done, often for severe prolapses. The risk is there however of a prolapse (vaginal vault prolapse) after the womb is removed.

I know you have been waiting for your op for some time, but if you have savings, would you be willing to consider it privately? I believe it's around £6K. You could choose your surgeon and have it done within weeks.

Firstly I’d like to comment on how nice it is to have sympathy from everyone on here. I wish I had sort advice about my OH years ago when my son was 4. Maybe I should start a new thread to give my advice looking back because sadly I don’t suppose I am the last to go through infidelity mixed with a young child. Anyway, thanks all. I did have a Mirena coil fitted and within a month was seeking emergency removal. It took me 3 months to get back on an even keel. It was probably worth trying though. I worried about what would happen when I got so old that I had to come off HRT as I’m sure I’d end up in a loony bin; but was told to great relief by a doctor that he’s got a woman in her nineties still on it! IE If your body can’t deal with the withdrawal of estrogen; it can’t. HRT for life sounds grim; but I suppose I have to consider the benefits that do come with it. Actually the question of whether I could give up HRT has helped.. No not possible but that IS a long time taking progesterone when a hysterectomy would mean I only have to take the estrogen.
I should be getting a date soon apparently but yes, anyone who is at the start of this journey in their forties just get a loan and pay for it. I am just worried because I am 58- and a bad result, still with little support, would finish me off.

@Rainy00 Out of interest, have you actually tried stopping hrt to see how you are?

I don't think you addressed that point.

You are not at all old for the operation. 58 is no age at all.

Have you got a good surgeon? Have you met them and discussed your fears about the operation?

ps It might also help you to post on Relationships about your marriage.
Living as you are with no sex and no support is grim.

why spend another 3 years of your life that way?

3 years- nope, 30 years!

Yes, stopping HRT puts me in a dreadful state; all the aforementioned symptoms; panic attacks, migraine, emotional distress to name a few. I had felt well enough to think that I didn’t need HRT anymore. I have a friend who works with people who are permanently on psych drugs, and she said it’s common for them to feel the same and stop taking their medication and then become psychotic. She can’t believe how one small pill keeps them well. Sometimes the body does need that permanent help.

Thanks. What I said is true, but we do have common ground and in the last few years have moved closer. There is still much I admire of the man. I would have been better going years ago, but as I stayed - I stayed. I have grown enough to know that I won’t be unhappy going forward, so we’ll either sort ourselves out or as our son goes to uni we’ll part.

I had a hysterectomy for progesterone intolerance. I opted to have my ovaries out and I think that was a mistake as the hrt has never worked properly since. I can manage my pelvic floor with exercises. I have also gained weight. So not really a success.

Thank you for posting. You are just the type of person I was hoping to link with. Presumably you now just taken estrogen. At the same level you did before? And you’ve got some of the symptoms that made you turn to HRT in first place? Are you pre-menopause?

Hello I have just had a hysterectomy 3 weeks ago due to progesterone intolerance and menopausal symptoms. I was lucky after having to be quite firm asking for a referral to a specialist H’s menopause clinic (that was the hard bit) I was seen fairly quickly. Time frame approx finally got a gp to refer me in early July managed to get an appt mid August agreed to try out one more type of hrt had review end sep agreed to hysterectomy had op mid Nov. Good luck.

Sorry specialist *NHS