What happens after menopause? : Has anyone... - Endometriosis UK

Endometriosis UK

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What happens after menopause?

Heloo85 profile image

Has anyone on here, gone through their entire adult life with Endometriosis, treated it with various treatments, surgery, combined pill, gone through a natural menopause and then bam ‘just been cured!’

The reason I ask is because that’s how every single bit of information you read online states! Like crippled on day, menopause, oooh fine?

Surely that isn’t the case! I have DIE! Bad DIE! Likely had it a long time before it was diagnosed! I have organ dysfunction! I’ll be hard pushed to believe all that accumulative damage done over the years will just miraculously disappear? Maybe I’m wrong?

26 Replies

I’m now officially menopausal but no change for me so far. Just more problems.

Heloo85 profile image
Heloo85 in reply to Bethleah

I actually genuinely didn’t think it would make a difference in some people! The research and medical community are a bit thick really! They refused me surgery! I had one at 31 and they was secretly fobbing me off on hormone treatment. I lasted a further 5 years with very severe Endo before I almost died! Now supposedly I’m getting this surgery! I asked them what was they trying to do? Get me to menopause and bam all of a sudden I am cured(?). I highly doubt all my organ damage would be cured! My bowel is knackered! My kidneys are being strangled! Oh, but all I needed was the pill 🤣.

Most menopausal cancers are estrogen receptive so some women have high estrogen levels even after menopause!

Xx

What kind of problems?

Menopause symptoms and now primary hyper parathyroidism. So hot flushes, emotional stuff, palpatations, more brain fog and fatigue,

Me too. 😏

I don’t think it’s the case for everyone and common sense would suggest that old adhesions could still cause issues post menopause. I had stage 4 endo involving several organs and have had 2 previous surgeries. I am now 51…a couple of years ago I was worried as a lot of my symptoms were starting to return, however now I am entering the menopause things def appear to be settling and much fewer flare ups which I presume will become even less.

I can’t say I have no symptoms but they are manageable and I am hopeful they will continue to improve.

Hope this gives you some hope xx

Heloo85 profile image
Heloo85 in reply to Hilary1970

You’d think common sense would make you believe that, but it would appear the medical community don’t have it! You actually hear a lot that people who have had a surgical menopause have to take on the fight again to be heard! Currently trying to do some research and it’s a disease of reproductive aged women! That means pre menopause! I don’t believe it is for some people! I myself have been told I will have to be careful after my hysterectomy and oophorectomy, with what HRT I take! So I think they do know, it’s just that they like to fob people off! “Ooh you’re at menopause you’re cured now!” Xx

Have we “spoken” before? Sorry if we have. How are you getting on these days? I’m 51 too. On a wing and a prayer with my continuing endo journey. Oh to be a man……waiting for results of a hysteroscopy and completely confused about what my next steps are. HRT or not? Coil or not? Surgery or not? Really cheesed off TBH and hard to know what to do.

I’m fascinated by this thread because if you read my profile I’ve had a really dreadful life with endometriosis. I turned 50 and went 14 months without a period or pain and my life was blissful. Then 2 abnormal bleeds, not heavy more like blood when I went to the loo, familiar dragging exhausting pelvic pain, hideous back pain for weeks…. then had an ultrasound which showed thickening of the womb?? Had a HORRENDOUS hysteroscopy last Tuesday in which a polyp was removed and the surgeon took biopsy for endometrial cancers. I refused the coil being fitted at the same time based on my gut instinct. I was glad I refused it based on the pain from the hysteroscopy as I had to be sedated for an hour after coming round from anaesthesia. Worst pain of my life and that’s saying something. I can’t understand the medical community’s mixed messages for ladies like us. HRT or no HRT? Are my endo lesions still there? Probably. How do I know without more invasive surgeries? I’m hoping that because I had 14 months trouble free that I can have that again. I’m just not sure what to do for the best. It’s a FLIPPING MINEFIELD….. 😟 Watch this space. X

Heloo85 profile image
Heloo85 in reply to Brambledoggy

If you get on with progesterone it’s a good idea! Is thins out the womb and stops any cancers! It will also thin out your Endo, if you have any lesions left. It can actually cure cancer of the womb! It’s not bad, IF you can tolerate it!

I don’t have cyclic pain with my Endo! Never have! I have constant pain! Not sure what it is about my hormone imbalance but I can’t take progesterone at all! The last time I tried I was hospitalised! There’s a subset of women, who’s estrogen levels have been too high for so long that you cannot correct it with progesterone!

But, in your case, it is actually a good treatment option for both the hyperplasia of the womb, and the Endo you may still have xx

I’ve been told I’ve been oestrogen dominant all my life. Wonder if there are progesterone options other than the coil which terrifies me. My cervix is so unbelievably sensitive. I had to do a vaginal swab at home last month and ended up in the back of an ambulance, the medics thought I was having a stroke….so coil, erm, nope…..

Heloo85 profile image
Heloo85 in reply to Brambledoggy

There is the mini pill! Yes, estrogen dominance is what causes Endo! It’s likely what is causing your womb to get thicker and thicker! The thing about the coil is the hormones act directly where you need them, the womb! And it’s a lower dose! You see, progesterone can cause blood pressure to drop, so the pill, or implant may not be suitable, I don’t know! Think about it though! They can put it in under anaesthetic! It could be life changing and life saving xx

I think the view that endo issues dissipate post menopause is a bit of a medical myth really. For some the endo is less fuelled by higher levels of natural oestrogen and that may improve matters etc but that’s not the only engine of endo itself or actually the consequences of surgery and life of poor pelvic health. A lot of the long term complications of endo and adenomyosis can be hidden under ie slow/poor bladder /bowel function/control ( it’s your age dear …) headaches, exhaustion ( it’s the menopause/age, mobility fragility , etc.

Yes, I think the same! Estrogen doesn’t drop for some women after menopause! Hence post menopausal cancers! There’s a lot of factors involved! Weight is a big one! Fat cells produce estrogen. Heavy alcohol use, causes liver damage, which then makes processing estrogen harder, increases estrogen. Constipation, increases estrogen! Then the adrenals! Another thing that produces estrogen. The ovaries are but a small organ in a big equation!

I have spent my life estrogen dominant too! My weight has been getting subsequently lower! I have one ovary im sure is dead due to an abscess! In fact it isn’t an ovary anymore, but a complex cyst! And yet my Endo is raging! Raging! Im currently looking at Drs to figure out why im Estrogen Dominant! They likely won’t figure it out! Lol xx

While oestrogen can be serious fuel to the fire it’s not the only inflamer of endo and adenomyosis. I’ve always had low oestrogen but here I am … It’s a known thing . The chaos of menopause again can be fuel itself as can cortisol chaos. It’s a complex beast.

The cortisol is a good one! I was looking at cortisol as a potential cause! Aka adrenal insufficiency! So you’re low in estrogen? That’s interesting! What symptoms/signs of low estrogen do you have?.. Xx

You see, I don’t believe there’s one cause for everyone! Just inflammation/hormone imbalance causing it! I also don’t believe it’s levels of hormones! Low/high, doesn’t matter! I think what seems to drive it is the imbalance between estrogen/progesterone!

Cortisol lowers estrogen!.. But we all already know ‘stress’ aka cortisol is damaging to health! Aka a cause for inflammation! I did do some research on adrenal insufficiency years ago, due to have a horse that was anhydrotic! Vit B was a good one for levelling out the adrenal glands but I don’t remember it all!.. There’s a lot too it!

Xx

Ps not saying your high cortisol levels are down to stress, I’m just saying high levels are associated with stress! You must have a pathology, that for some reason increases your cortisol levels! Just like I have a pathology that pushes up my estrogen levels! Which is a bit of a sick joke really because I have a family history of early onset estrogen receptive cancers! I live a complete low estrogen lifestyle for that reason and still crippled with a highly aggressive form of endometriosis 🤣 xx

It’s a dance is it not 😊I’ve had secondary adrenal insufficiency on hydrocortisone for some years , I’ve now sorted with other treatments. Let’s say hormones of extremes do no good. The waves need to be gentle. Low oestrogen- just think of it as extreme sport menopause that turns one into a depressive utter b****h and blubbering mess. Plus endo. No fun. Am sure that endo is responsive to the massive swings of hormone fields whereas smoother regulation doesn’t provide such an easy territory for proliferation.

I honestly believe it is down to ratio! I’m trying to think back to just before my Endo got really bad! Ie passing blood clots from my kidneys because it narrowed my ureters! Me and my partner at the time was trying for a baby! Pretty sure my cycles where long! About 35-40 days, although considered normal! My periods over the years definitely got lighter but longer! They lasted around 10-12 days! No one’s looked into me hormonally! So I have no official diagnosis! But I’ve always expressed high estrogen! Always been lean, ripped and aggressive, so I assume that is high estrogen! But as I’ve got older, I’ve got thinner, not fatter! Not sure if that’s down to estrogen rising still(?). People normally gain weight once estrogen starts to drop off! I’ve definitely up to now done the opposite! My entire family, mother, sisters, even twin sister are on the big side! I definitely didn’t follow! Xx

You don’t say how old you are but pre,Mid and post menopause are such different creatures hormones wise. Balance you are right is key.

Low cortisol or hyperactive Thyroid, higher level testosterone can make for thinness, again the more extreme the more obvious but with hormones the root is often harder to locate. Old Prof of mine used to say where there’s deficiency there’s excess you need to address both. Sometimes infection or stress can really wind the clock up - say hyper thyroid often pairs with cortisol deficiency ( both which cause thinness of course - I went down to 7st after infection and the pair going on a waltz) .

Once they go to one way they can just head off in the other direction too which can be a touch confusing. Peeps tend to think of hormones are being in more fixed relationships rather than relative and flowing one to another.

I am awaiting an appointment with an endocrinologist to see what they can throw up! Thyroids normal! Never had cortisol tested! Testosterone normal! To be fair, I think all my hormones are ‘normal!’ 🤣! Other than Vit D at times, everything else is good! Funny you should mention infection! I am prone to infection! Had severe measles as a baby! I get loads of infections! Had Sepsis a couple of years back!

Only 37 but hormone levels should be starting to drop off now!.. I’m way past peak fertility! Xx

Good luck with the endocrinologist . It’s sometimes what’s in active absorbable form rather than how much is circulating. Different tests show different things. Normal levels in UK vary from acceptedNorm levels in Europe and US. Bit debatable really…

To be fair, only had hormone levels checked back when I was a young kid! Because believe it or not, I had heavy, irregular, painful periods 🤣. Not had them done anytime recently! Had Thyroid checked! That’s normal! I think that’s it for recently! I just have standard tests now! Glucose, U&Es, liver bone, fbc! Don’t really show up much! Alls good! Xx

Hormone change a lot so hormones done when you are young aren’t really an indicator. Hope they find an answer for you.

The new guidelines support that endo doesn’t necessarily end with menopause and that medics need to adjust their” sets “ . Not that they necessarily want to pay attention to it though. I suspect that along with general endo research this really hasn’t been properly researched or understood. So ongoing issues like thyroid and heart issues, depression more prevalent with endo aren’t considered with post menopause care of the disease associations .

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