Endometriosis and menopause : Hi all, I am... - Endometriosis UK

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Endometriosis and menopause

StoneyClaire profile image

Hi all, I am 46 and was diagnosed with endo at 20. I have had several laparoscopies and have been lucky enough to have three children. Every time I have tried hormonal treatments to manage my symptoms I have become depressed or angry or both together.

I am fairly sure that I am now heading into the menopause- poor sleep, periods have gone haywire and I feel crap all the time.

I would really appreciate some thoughts about treatments when you have endometriosis. Is HRT ok? Will the hormones make me depressed etc?

Thanks

27 Replies

Hi. I am on HRT due to surgical menopause. I’m on everol patches for estrogen and then take progesterone tablet daily. I’m 42 and have been advised to continue progesterone until 50. The thought is this will help reduce chances of endo growing back but I don’t actually think they can ever be certain it won’t. I’m ok taking hormones so can’t provide experience of impact on mental health but hopefully others will be able to help.

I’ve not experienced any menopause symptoms whilst on HRT so it seems to be worth it!

Hi I completely resonate with you.

I'm 44 mum of a 16 & 12yrs old girls

It took me 7 years to be diagnosed with endometriosis, years of chronic pain, unbearable periods, migraines, incredibly violent reactions to certain inflammatory foods, a few ER visits. In my journey in and out doctors appointments I found I have also IBS, fibroid uterus, a blockage from endometriosis that restrict my bladder.

But I’m feeling particularly passionate about this since I have had my first surgery (4 yrs ago) to remove the endometriosis. But the happiness last very little 3 months after my operation I was in debilitating pain. I couldn't barely get through my day. Without mention how tired I always was.

4 years ago, out of frustration, I posted asking for any suggestions to help with the pain, etc. and I was blown away by the input and the discovery of new information. I am not a doctor and I am by no means citing anything I’ve learned as fact, but it’s definitely inspired me to ask new questions at my post-op and even consider alternative treatment options.

I highly recommend maintaining an anti-inflammatory diet, including limiting or eliminating irritants like gluten, dairy, fried foods, non-organic/grass fed meats, etc.

I started on this plan year ago that completely change how I feel and certainly helped me take ownership of my life and the best thing is no have to worry about additives, ingredients, etc.

But I'm grateful it was recommended to me it have give my life back I'm more energetic, my mood is completely different (I was tired and depressed and I couldn't control it), and I looks so much better too. if you will like more info please email me lairam19@hotmail.com and I will happy to share with you, please put endometriosis as a subject so I know is no a spam.

klc48a profile image
klc48a in reply to MariJ2

Hi I am 53 zi have suffered with Endo since my 16 various pills a couple of laproscopies and the awful chemo Injection they give you still didn't take all my Endo away. Now like you I have to watch what I eat but I still have good and bad reactions to even what is good food. I am at a loss the vomiting and pain is unbearable I give up eating for days after enduring these attacks.

Hi, I’m similar age to you and have been lucky to have 2 children even after severe endo (3 ops, injections, and now fused bowel, bladder and womb due to endo).I have had similar symptoms over the past few years such as anxiety, low moods, hair thinning, brain fog, bloating belly. My GP has diagnosed me as peri menopausal and prescribed HRT gel (after consulting with gynaecologist who reviewed my medical history). The estrogen gel can be delivered in very low dose so more easily managed to ensure no negative impact on the endo. I have found it has helped my mood and sleep, the acne is still there though! I still have to take my combined pill for 3 months without break as previously so not sure how periods would behave if ‘normal’ cycle. Considering all risks vs quality of life I have decided to take HRT. There is a menopause specialist called Dr Louise Newson. She doesn’t have a lot on endo but lots on menopause symptoms and treatments and an app called Balance to help log symptoms. These have helped in conversations about symptoms and treatment options. I am also very lucky to have a GP who specialises in women’s health and looked after me for many years so it has not been a battle to be acknowledged, diagnosed and treated. Good luck x

Hello there, I too have struggled taking hormones. I have endo & adeno and after 3 different pill brands I refused to take any more due to the severe depression. I was offered the Prostap injection and took that for a couple of years. As it causes menopause symptoms I had to take HRT. I was very reluctant to take the hrt but thankfully it was ok. It stopped the symptoms completely (I was having heart palpitations and night sweats) and really made a difference. I was taking tibilone. Hope this helps!

Hi I am interested to know more about prostap and tibolone if you don't mind. I have been pushing for them but my GP and the gynae I was referred to at the hospital are hell bent that it is not used on a long term basis, that it is only used pre-surgery for a maximum of 3 months and since I aren't booked in for surgery I can't have them. You were writing in the past tense. Are u no longer using them and what made u stop. How did they help your symptoms?

Hi There, I was offered Prostap as I’d really struggled with taking the pill and I didn’t want the mirena. I have a fantastic consultant and she offered me it. I was on it for nearly 2 years and it was the best treatment I’ve tried because it stopped my periods completely and therefore I was symptom free. The side effects are the same as in menopause so I needed to take the HRT to manage that and I was fine on those. My consultant didn’t want me to continue on Prostap much longer as there is a risk of long term complications such as oesteoperosis. So I reluctantly came off Prostap and had the mirena fitted. I persevered with that for a year but it was a disaster. Caused more pain and elongated the periods so I had that removed. I am on the waiting list for a hysterectomy and at the moment am treatment free which is becoming problematic. I’ll be pushing to go back onto the Prostap if my wait for the opp is much longer. Feel free to DM me if you have more questions

Yes, the risk of bone loss is the reason they're not offering me prostap. And u are absolutely right, except for the risk of oesterio whatever 😃 that was the best treatment I've ever had. I had zoladex though which is in the same drug group as prostap and I was also having tibolone at the same time. The 9 months I had it was the best 9 months of my life since 8 years. I was with a different GP and gynae and they both thought it was ok for a few years but 9 months later I moved house so changed doctors and hoped they would continue the treatment buy nah, they're not having it! A month ago at their insistence I had the Mirena fitted. No change in symptoms yet. I was told it could take some months for it to start working. I will give it a go and if it gives me more problems than cure I would be thinking of going private to see if I could get the prostap/zoladex back even for a year because that would make a huge difference to my quality of life from past experience. Unfortunately I haven't yet made peace with the idea of hysterectomy, so until I can make that decision I will keep trying these other treatments and see if they can sustain me till menopause. Or am I deluded to think that the menopause would make this go... forever?

It’s my hope that the menopause will fix things. But who knows. I guess until the medical profession figure what causes these horrible conditions we’ll never know for sure! My consultant does also take private patients. She’s fabulous! I’d be happy to share her info via DM

Hi you can get a blood test via your GP to see if it's perimenopause. That could be a good place to start. I've just had an operation and have surgical menopause so I've been researching as I have not tolerated hormones, specifically progesterone in the past. It makes me really depressed and have suicidal thoughts....and that's not me at all I'm a pretty happy person. From what I understand the HRT im taking which is an oestrogen gel is completely different from oestrogen contraceptive hormones. It's bioidentical and not synthetic. It is also at a much, much lower dose. I think you might need progesterone too so that the oestrogen is not unopposed and 'feeding' endometriosis. This bit I'm not too sure on and is worth investigating. I'm not taking progesterone currently as I have had everything out and progesterone tablets send me crazy. Obviously as you will have your own hormones too, and presumably a uterus you would need something different to me but from my research it seems like there are lots of options to try and you can play around with strengths and make adjustments or stop using it you don't get on with it. I found diet changes, sleep training and exercise really helped with my symptoms before. Mine was not natural though but as a result of ovaries going into shock post surgery in my late 30s. They recovered though but have now been taken out. Good luck.

Hi there, I was diagnosed with Endo and Adeno early 20’s and I’m now nearly 47. Have had several surgeries and did manage to have a baby with IVF (she’s now 14). My adhesions are severe and as a result a hysterectomy would be very difficult and likely result in a large bowel resection and colostomy. I had tried the combined pill in the past with terrible consequences - yes, the depression was debilitating and I persevered with a few brands but it was always the same. Prostap was ok. I’m now on Zoladex injections to switch off my cycle and put me in a fake menopause and to protect my bones etc I take Tibilone HRT. It’s absolutely fine and I’ve not had any trouble at all, it’s like I’m not taking anything. I was amazed. My hair did fall out a bit when I first started it which was a bit scary but I have a lot of hair to lose 🤣 and it did settle and then stopped happening after a few months. I’d recommend the Zoladex and Tibilone combo, the only trouble is I won’t know when my actual menopause is happening! Hope this helps

slk2019 profile image
slk2019 in reply to cleth2

Hi can I ask whether this has caused weight gain?

cleth2 profile image
cleth2 in reply to slk2019

Hi. No miraculously it has not! The pill always did and my weight has been up and down, depending on whether I’ve had ovarian cysts I think, but the Zoladex and Tibolone have been fine. It’s been 10 months now too.

Hopeandpray profile image
Hopeandpray in reply to cleth2

I've had zoladex and tibolone for 9 months before and those were the best 9 months of my life since 8 years but unfortunately I moved house and my current GP is not having that, insisting zoladex is only recommended for maximum 3 months and usually to prep for surgery. So sad I'm having to live with these symptoms again and they've got worse over time!

cleth2 profile image
cleth2 in reply to Hopeandpray

That’s terrible. He’s a GP not a specialist and so he needs to refer you back to someone who can manage you and not take it upon himself... that’s not how it works. If a gynaecologist started your Zoladex treatment, he shouldn’t be able to just stop it. Ask for a bone scan and if it’s all ok he should prescribe your Zoladex and Tibilone again. I know it’s not ideal to take longer term but you cannot live with severe endo either! Good luck.

Hopeandpray profile image
Hopeandpray in reply to cleth2

Ironically they referred me to gynae at the local hospital who simply echoed what my GP said and instead "sold" me the Mirena. I've had it fitted since a month now but no change in symptoms yet although they warned it could take some months for it to start working. So that's where I am at the moment ☹️

cleth2 profile image
cleth2 in reply to Hopeandpray

They love the mirena don’t they?! I’ve been offered it so many times and have always refused, I have a mental block where that’s concerned for some reason and have heard varying experiences. I hope it works out for you and will keep everything crossed!

Hopeandpray profile image
Hopeandpray in reply to cleth2

Yes they do love it 😃 Thank u so much. It's been really nice hearing from someone who actually understands what I'm going through. The best chat I've had with anyone today!

cleth2 profile image
cleth2 in reply to Hopeandpray

I think this is a great forum and you should always find support here. X

Hi StoneyClaire. Like you I am perimenopausal. My GPS have been horrendous. Their level of ignorance is beyond shocking. After years of painful, varied, various symptoms, they told me that ‘for endometriosis, nothing can be done, for interstitial cystitis, nothing can be done, for the perimenopause, very little can be done as you have a history of breast cancer in the family. You have IBS, here have some Citalopram, it will make you feel better.’ ‘It is the policy of the Peartree Surgery to refuse cytoscopy to all menopausal women.’ This was 2019. I was very ill following a botched laparoscopy surgery at the local hospital by an experienced urogynae whose diagnosis was that there were just a couple of spots of endometriosis and I did not need any further medical treatment and advised the GPS and other medical professionals. Effectively, he blocked my medical care. We strongly suspect that he did ablation because I have still burning pains along my C-section nearly every evening and I was in a lot of pain following his surgery. Accompanied by my husband, I went to the GPS, told them to organise the necessary referrals for a cytoscopy, à physio lady and to another hospital for a 2nd opinion. This 2nd hospital referred me to their endometriosis specialist. He organised a hysteroscopy, laparoscopy with ureterolysis. He diagnosed and excised endometriosis on and around the ureter, bowels, both pelvic side walls, uterosacral ligament. As much for endometriosis for which nothing can be done, the IC and the IBS! As I was still having cyclical bowel and rectal bleeding, they organised a colonoscopy 2 months later ( as the local hospital messed up on that as well !) and they diagnosed and cauterised 3 sites of 3cm of hemorragic colitis with neovascularisation. As much for the IBS!Also, since May 2019, As I was reacting very badly to a lot of food, emptying myself daily, I put in place my own anti inflammatory diet that excludes : gluten, dairy, soya, chocolate, caffeine, apples, brown rice, dry beans/baked beans, tomato purée. Instead I have vegan chocolate, gluten free bread, pasta, flour, coconut milk. This is how I managed to reduce the pain, flare up and still do these days as food makes me sick. I informed the GPS but they were not interested, so I carry on solo. The surgeries have also helped in terms of energy levels, pains /sudden pains. I have also put in place my HRT and told the GPS that I wanted Oestrogel and Utrogestan. I take Utrogestan vaginally before bed because it made me feel sick if I take it orally. This method is licensed in Europe but not in the UK, Dr Louise Newson talks about it too. I feel better in myself, I still have low mood based on the cycle. I managed anxiety with Rhodiola ( herbal remedy from H&B), it did help me greatly when the local medical professionals turned their back on my medical care and I was so very confused and ill. I was also very angry and Rhodiola helped on this too. It helped level my mood. still wake up every night with night sweats, this is still a work in progress 🙄. When I told the GP about the Oestrogel and Utrogestan, she told me that she did not know about this combination… says it all! No wonder they tell women that ‘Nothing can be done ‘.😱🥲 It makes me wonder how many women receive no treatment at this surgery because the GPS can’t be bothered and /or are so very ignorant and untrained in women’s healthcare /gynaecology. They send women to the wall and are protected to do so. There is no age limit for HET, this is in the NICE Guidelines but the GPS are ignorant of this too; I intend to take it for as long as I can because it gives me a quality of life and whatever our age, we are expected to carry on working and taking care of a family. If I react to anything, then I try to find something else. This has been my journey, I am better but I have no thanks and no respect for the GPS, and I will never forget nor forgive how they put my life in danger. My family suffered too. I now realise that I can not rely on them for any medical help and support, I am the one who tells them what to do, it’s no longer the other way round. The CQC protects them. Take charge of your medical care and good luck. x

Hi. I'm also perimenopausal and been wondering what to take as I really don't tend to get on with hormonal treatments. I've been looking up various things and am about to start taking Igennus Vegepa Omega 3 capsules. They have clearly helped a lot of people with various ailments and I prefer the thought of trying something natural first. Interestingly there are articles out there on fish oil and menopause so worth looking into. You'll get what you pay for with a fish oil supplement and the Igennus Vegepa capsules have a high EPA value.

Hi I’m peri menopausal but can’t tolerate hormones the side effects for me are worse than the Endo. As yet I haven’t found anything that helps with anything. On getting up in the morning the nausea hits at hot flushes in the day and worse at night. I also get up 4/5 x a night to pee so I’m lucky if I get 5 hours of sleep and it’s not in 1 block. This makes the fatigue and brain fog worse. Hrt may work for you so it’s worth looking into. You can stop it if it doesn’t suit you.

wow this is me. I have nothing to share other than my own story here and a virtual hug for anyone else feeling this way

I am 44 and was diagnosed in my 20s. Unfortunately never had the opportunity for my own children but currently not had period for 5 months, not sleeping (insomnia and sweats), can't stop crying/anxious/irritable all the time, really bad back stiffness every morning and I feel like I'm falling apart. Considering going back on Prozac (took it for 8 years it really is a miracle drug - but came off it due to not sleeping and feeling like a zombie). Had tests but nothing pointed to perimenopause so currently waiting to see what time brings... the GP said blood tests don't always pick it up - would be great if we fit neatly into boxes hey ladies...

Hi I'm 43 was diagnosed with endo in 2018 after years of horrible periods and gp putting me on the pill at 21 as periods had stopped.

By 2018 the periods were so bad while still on the pill I was finally referred to a gynaecologist and he did a laparscopy which diagnosed stage 4 endo. His response was to put me into fake menopause with decapeptyl injections and livial tablets. I was nearly driven mad by my anger on them so stopped and the weight gain was insane afterward.

Covid happened and I couldn't see anyone so I had to suffer in silence and my endo came back worse than ever. In May of this year I finally saw my gynaecologist again and again he insisted on decapeptyl injections and livial a stronger longer dose this time. My periods stopped but the depression hair loss acne constant bouts of crying for no reason and the migraines and dizziness is insane. I've never had migraine in my life and when I said this to the gynaecologist he said you're not following it properly and was more interested in why I wasn't enjoying a good sexlife. I'm told its this treatment or nothing there's nothing they can do for me. I'm 43 in Republic of Ireland and I am worse than someone who went through menopause in the last century. I have no quality of life I'm constantly tired and nauseous and dizzy most days and this is daily life now. I'm coeliac fir 20yrs and so I avoid gluten and eat a very clean diet, no processed foods or dairy. Yet still I'm like this. I won't have a job much longer if this doesn't get better. I wouldn't recommend decapeptyl or livial treatment to anyone. As bad as it was I was better off before I ever met the gynaecologist.

I’m also 46, peri menopausal and don’t get on with the pill etc. Recently tried HRT and it is good and much more gentle than the pill BUT the oestrogen massive flared up the endo (they didn’t realise I had it) and made it much much worse so please make sure your doctor is aware. Good luck with everything!

Hi So glad you were blessed- hormones are just trying to settle into

a natural menpause but like me - after the I have had injections not all

worked.

I find putting more nature items into my daily diet helps but mental health

it depends on ( family the children /partner will be able to help

in one way by gentle family picnic - which at this time of year just

about possible

Nature items to consider ginger thyme - most herbal plus their is a natural

cake mix ( maybe a small bx 0 soaked overnight in soya milk add what

- you like- ginger,cinnmon etc at any local shop(storecupboard)

Has to be cake mix- put into a lined cake tin has to be baked 1.5 hrs to dry out

at - standard temps- Use as slices in morning to boost energy .

Fines it helps but it may not be enough - so you need to return to your gp

for a while. Normal ck ups etc.

Take care

Wow. Hey darling.. sorry to read you're still having a battle. 😔

Reading all the above responses.. I wonder what the hell Prostap/Zoladex does to us long term?

I had been on Prostap for 12 months. Last dose was March 2021.

I had very successful excision surgery from an expert at a BSGE Trust. However I'm STILL suffering with hot flushes, night sweats, low mood: all menopausal symptoms.

I've resorted to taking the estrogen gel along with Prosetrogen tablets of a night, which over time, has worked well for me. I've managed to titrate the Oestrogen gel so that I have a happy balance between symptom control of "menopause" and avoiding the pain which still flares a little, with excessive oestrogen.

Two of my work colleagues have had Zoladex for Fibroids. They also had their last injections nearly a year ago and are still suffering with menopausal symptoms

Makes me wonder why the hell we are still suffering with these symptoms??

Does Prostap or Zoladex bring on a premature menopause, particularly if you're older (I'm 44)?? 🤔

Sending lots of love xx

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