Think I’m giving up on HRT, endo & bleeding flaring yet again…

[Brambledoggy]

Hello, I’m a regular on here. Some of you know me, others probably not.

Wanted some advice so I’m going to keep it simple.

1. I’m 53 with a history of endometriosis all my life. Debilitating and just absolutely rubbish for me. Like all of us on here. I’m unfortunately no different.

2. My periods THANKFULLY stopped in 2021, when I was 50. And I was thrown into HORRENDOUS menopause with over 27 symptoms which were again, just debilitating and rubbish. I was reluctant to go on HRT but after a couple of years I did. Obviously continued combined HRT.

3. I was absolutely fine for a year and then started bleeding and experienced pain again. That threw me as I thought I was over all that. Investigated and given the all clear for anything sinister. The pain involved in my hysteroscopy was legendary.

4. Carried on my HRT. No problems for about another year then wham bleeding and pain yet again.

5. Carried on but adjusted my HRT by upping progesterone. Doubled it from 100mg to 200mg. Made me feel dreadful so went back to 100. I give all the adjustments three months to settle.

6. Lowered my oestrogen to 50mg from 75mg. Just to see if I was “stimulating” the endo.

7. Went to loo today as felt chronically fatigued and lo and behold, more bleeding. I am so cheesed off. Very upset that I can’t seem to escape my periods, even at my age.

I’m about to stop HRT completely. Is this wrong? I will get some advice from my GP and possibly go private but what I don’t understand is why I was SO OKAY with HRT for over a year and then it’s all gone wrong for me and my body.

Any advice and experience welcome from others in same position.

[Joonaspryte]

my story is not quite like yours coz i had total hysterecomy 16 years ago.

But im 58 and have diagnosed endo, and probably bowel and thoracic endo.

I bleed heavily from my bowels, this seems to be a sort of weird cycle too.

Im coming off hrt, which is giving me all the horrible menopause symptoms.

At 58, i too am totally fed up about having to be going through all this again at my age, so wanted to say i totally understand where you are coming from and show you my support.

[Brambledoggy in reply to Joonaspryte]

I don’t get why when your periods have dried up and disappeared you can bleed again. Where the hell does the bleeding come from if your periods are over and your eggs have gone into hibernation?! Sorry you’re going through all this too. It is no fun. And haven’t we all been through enough?

[Sunset-lady]

I'm sat here bleeding this morning too Brambledoggy. I'm on Zoladex - you possibly know my story already. I remember yours. I've tried all kinds of HRT combinations too. I was CONVINCED it was estrogen after all my research so increased my progesterone to 200mg and lowered estrogen gel to half a pump: I felt dreadful. Then as soon as zoladex ran out I hemorrhaged again so ot obviously wasn't estrogen. So now I just don't know what to do. Could it be fibroids for you? If you find any answers let me know. I think it's really hard for those of us who fall into "unexplained uterine bleeding" bracket particularly in your 50s. I just want to get on with my life x

[Rainbow2468]

Hi i refuse to go on hrt for the fear of bleeding as mine was horrendous already. I'm currently on prostrap injections and it's sorted it all out. So sorry you're suffering so much, sending you a safe hug too xx

[Sunset-lady in reply to Rainbow2468]

Without HRT I am a mess mentally. I have no energy or drive to do anything. I'm like a Stepford wife just going through the motions of life. I FEEL nothing anymore. I'm constantly choosing between my mental and physical health. So pleases it's still working for you Rainbow. You've had a great run on Prostrap x

[Brambledoggy in reply to Sunset-lady]

I can completely relate to that. I have lost my mojo and desire to do anything and that’s ON HRT. I feel lost and unanchored and drifting with no direction. Thank god I have my Labrador! I’m scared to come off HRT as my symptoms were so dire but I just might now. I actually was so cross and frustrated I wrote a long letter to Louise Newson last night to say how “forgotten” and ill advised we ladies with endo and menopause are. We are actual hormonal guinea pigs. When I upped my progesterone I got really depressed (not like me, as not in my nature) so I had to drop it again. Weirdly this morning my pain and bleeding has totally stopped. I’m beginning to wonder if it’s the strong steroid cream I have to use for my NEWLY diagnosed!!! (Yes, it’s brilliant isn’t it?) Lichen Sclerosis which flares up badly. Another auto immune condition. I’m kind of considering that it’s making my hormones disrupt and create pain and bleeding, yet if I stop applying it, I can’t cope with the horrid symptoms of the LS. Louise Newson replied straight away to give her some credit and agreed we are neglected. I am so sick of other women saying how terrific they feel on HRT, their hair is thick and they can compete in marathons! It’s all over the TV. I could throttle Davina flipping McCall. I just feel like a hormonal, pathetic lump with zero energy, thinning hair and a belly that’s so bloated I look 8 months pregnant. Not sure what my next steps are, Louise Newson said to try something you shove up your vagina every night. But that’s not going to happen! Those days are well gone thank God, and there have to be some benefits of staying single!

[Realtiger in reply to Brambledoggy]

Hello again! Good for you for pointing this out to Louise Newson. I only discovered I had endo going into menopause (thankfully I hadn’t had many of the period related symptoms but had been struggling with more generalised musculoskeletal pelvic pain and leg weakness for years) and have found the general lack of information frustrating. Gynae consultant reassured me everything would improve once I hit the menopause. Ha!

Have also been collecting autoimmune conditions in the interim and honestly couldn’t distinguish between meno and hypothyroid symptoms at one point. By the time I got to 40+ hot flushes a day, anxiety, insomnia, fatigue and brain fog that weren’t relieved by thyroid treatment, my GP persuaded me to try cyclical HRT. I’m so glad I did as I don’t think I’d have managed to keep working. I didn’t have a bleed for 18 months and was so relieved - thought those days were over. Then had almighty bleed which seemed to kickstart a regular cycle but with breakthrough bleeds in between. Investigations for PM bleeding led to hysteroscopy and polypectomy for me too - hello fentanyl and morphine!

Assume they did an endometrial biopsy for you too?

Although cancer free, simple hyperplasia means two further biopsies at 6 month intervals plus a Mirena. I’ve switched to continuous HRT and dropped oestrogen from a 75 to a 50mcg patch. Still getting breakthrough bleeds and vile spotting but hope Mirena will resolve it. If I don’t get two clear biopsies I honestly won’t mind if I have to have a hysterectomy at this point.

As you were experiencing so many other meno symptoms I wouldn’t give up on it just yet. I’m really sorry about the LS too. I have learnt the hard way that optimising vitamin and mineral levels, increasing protein intake and keeping blood sugar stable makes a big difference. Is there anything you can tweak in this regard?

I hear you re the mixed blessings of being single but don’t hesitate to reach out 🌸

[Brambledoggy in reply to Realtiger]

I have always believed endo is an auto immune condition. More research needed. Much more. Baffles me if it affects one in ten, why not more is being done. All is happening is awareness is rife now but medical profession can’t keep up with the volume of women coming forward. And then we do eventually get a diagnosis, they don’t know how to treat it. Clearly that’s a nutshell summary. Agree totally with all you say. I will persevere a bit more. I’m naturally an optimistic person but some days I feel it’s hard to bounce back from my body. Still, things could always be worse. When I walk my dog (5 miles a day so a lot of time to ruminate) I ask myself five things that I’m grateful for in that moment. So, my dog, my eyesight, my legs, the countryside, sun…..it does help I reckon. Endo is a wicked condition. Menopause is very hard to navigate with endo. I was very naive thinking it would all be over and I’ve heard many medics tell you the same. It’s simply not true for some ladies. My diet couldn’t be healthier. It’s hardcore healthy and doing all the right things, as I’ve always had an interest in nutrition and eating well and following a strict anti inflammatory diet I think helps in many ways. I don’t think my diet could be improved especially now I live alone as I can eat what I like. Not sure what hyperplasia is?

[Realtiger in reply to Brambledoggy]

It’s so hard to be at the mercy of chronic conditions and menopause has just compounded things in my case. Equally hard to explain to other people - I’d have to have a leg hanging off with blood gushing out before a colleague who I’ve worked with for over 20 years would realise I’m having a bad day!

Simple hyperplasia is an overgrowth of the endometrial lining caused by hormone imbalance i.e. an oestrogen driven condition. Switching to a different preparation of progesterone or having a Mirena coil can usually correct it 🤞 It can eventually turn cancerous.

Hope you’re having a better day.

[Brambledoggy in reply to Realtiger]

Oh I think I got checked for that when I had a hysteroscopy? Checking for the thickening? It was absolute hell for me that procedure, I made a right fool of myself as I screamed down the recovery ward in agony till they gave me some kind of injection that worked in minutes. If there is an afterlife I’m coming back as a man.

[Brambledoggy in reply to Realtiger]

Also told recently “they couldn’t put a Mirena coil into her” due to previous endometrial ablation. You can imagine I was absolutely delighted about that.

[Rainbow2468 in reply to Sunset-lady]

I totally understand, i was like this before the prostap and I'm dreading them saying i can't have them. I was basically suicidal i just didn't want to be here anymore. I was constantly bleeding and the pain was horrendous at times too. I hope you're able to get the bleeding under control. Have a peaceful day x

[Joonaspryte in reply to Sunset-lady]

Same with me, i am having a terrible time without hrt, depressed, and just feel lifeless .

[Sunset-lady]

I'm just terrified that I will continue to bleed like this. There's no plan other than "you need to go through menopause and this will shrink everything and calm it down" but what if it doesn't??? I hear you regarding Louise Newson, Davina McColl and also Liz Earle - their "just add another pump and you'll feel great" terrifies me. 10% of women have endometriosis. There are loads of us and everytime you speak to someone they say "my daughter/sister/friend has that" but I agree, it's incredibly hard for women going into menopause to manage estrogen dominance and endometriosis. I wish they could do a hysterectomy but they already tried which is when they found the endo. I'd need a bowel resection now and they don't want to do it because I may end up with a stoma bag for life. My mates are thriving on HRT and I'm having to have zoladex every 8 weeks just to stop myself bleeding to death. I'm so depressed about it all xxx

[Brambledoggy in reply to Sunset-lady]

I know it probably won’t be of much use, but when I was bleeding heavily and for long lengths of time, I found a gentle liquid iron supplement helped my fatigue . There are a few in the supermarkets. Poor you. I hope you get some solutions very soon and have a decent support system around you. It can be very isolating. You can always direct message me if it helps.

[Bakewey]

telegraph.co.uk/global-heal...

I know this may be a bit too late for most of us here right now, but some one I know is involved in this - it’s positive for the future.

P.s. when I made it to the top of the list and was offered a hysterectomy at my local hospital, my consultant highlighted that once past menopause, all would be well. I sought a second opinion and they told me it was nonsense! Eventually, I had a total hysterectomy at a specialist endo centre. I’d started on HRT 6 months earlier which resulted in me no longer flushing or getting headaches, but the bleeding became horrendous! Knowing what to do for the best is a minefield.

Sending all my best wishes on this beautiful day ☀️

[Brambledoggy in reply to Bakewey]

That’s really interesting. I like hearing stuff like this. Maybe a glimmer of hope for the future. Menopause and endometriosis and HRT IS a total flipping minefield. I just thought it would all be over, not for me just yet…..🧐