I was diagnosed with Endometriosis in 2016 through laparoscopy and have been menopausal from probably about the same time. I've had no surgery for anything related but numerous MRIs, hysteroscopy, internal scans, etc. Have been told I'm now post menopause as not had a period for over 12 months. I'm still symptomatic of endometriosis - bloating, pain, bowel, bladder ,etc and still cyclical but discharged from gynae because they say it's not a gynae issue as endometriosis goes after the menopause!! Have now been referred to check it's not IBS and to just take Codeine and Naproxen and to just get on with it.... Anyone else had similar experience or issues or any advice.I'm going to get bowel/colon checked anyway just for reassurance but so frustrated that was dismissed so easily without any examination, tests or checks done. Basically implied that endometriosis now gone and no point checking because of my age...I'm 55
Endometriosis and Menopause : I was... - Endometriosis UK
Endometriosis and Menopause
goodness this sounds awful. Can you get a second opinion?
It also sounds like a colleague who post hysterectomy still has cyclical pain. (Ovary left in)
Are you on HRT?
We need a whole lot more research doing (I’m 51 with lap booked next month)
Tried HRT but made it worse. They just dont want to investigate or do any kind of surgery because they think there's no point now. This was a second opinion with a different NHS trust but basically saw the report from previous one saying the same and went with that. Had a private consultation with a endo specialist who wanted to do do another laparoscopy but I couldn't afford it but NHS wouldn't go off his recommendation. SO much more research needs doing, particularly for those past reproductive age as we seem to get dismissed due to age. You are lucky and wish you look with your pathway x
I am so sorry to hear this.
Keep going back, be the squeaky wheel. After one of my previous rounds of leaving hopeless and tearful, I actually rebooked to see my GP and when I asked for Gastro and Urology investigations as clearly it wasn’t gynae, he actually referred me back through gynae with a firm letter saying how much it was impact ing life/job etc. Gynae started down the …other investigation route again I left hopeless and tearful, so I penned an email and sent it via the secretary. It was polite and factual but stressed how I perhaps didn’t express myself correctly in the chair and needed more help. Since then I’ve been seen again, but I kept calling the (very patient) secretary and repeating my symptoms and she got me another appointment and suddenly things are moving.
My advice is don’t settle.
When they give you a we don’t know what to do result ask them what can you trial. Who else should you see. 🙏
Thank you. I'm going down the gastro route again and hoping they might at least investigate and get me answers. I'm at the point I don't care which department sorts it out as long as someone does but wish the NHS was a little more holistic and worked across departments to
If you try HRT your progesterone needs to be higher than estrogen.
You've been told a pack of lies! I'm 67 and still have endometriosis. I had a hysterectomy and bilateral oophorectomy 21 years ago! I then had Zoladex off and on for about 15 years. My symptoms persist. I need a walker/ wheelchair, have horrific bouts of sporadic pain and need to follow a low fodmap diet due to bowel endometriosis.
I'm appalled by the complete ignorance of many medics.
Please persist and get help!
Good luck! Xx
I tried saying this but he was adamant it's very rare and from what little he'd read about endometriosis it was highly unlikely. At that point he shut down with me and implied I was overthinking the pain and it's psychosomatic now... My GP wasn't happy either.I'm NOT giving up but thanks for reassuring me that I'm not making the pain up x
This is my fear that it will come back after the hysterectomy and attack my bowel. Can I ask why they put you on zoladex post hysterectomy?
Simply because I still had severe endometriosis symptoms even after numerous excision surgeries and the hysterectomy and oophorectomy. It helps me a lot and gives me more energy. However, I can now just about cope without it. I do miss it as it helped me a lot with the overwhelming fatigue I get.
I have NEVER used HRT and never would. xx
Go to your GP and asked to be referred to your nearest BSGE accredited endometriosis centre. They will help you and they understand this disease. Normal gynae departments don't know anything about endo and constantly hand out misinformation. Look up the BSGE centre first. You need to push for this x
Thanks. I'm going to try that
hi. Same for me. Bgse ditched me after last mri showed no endo. Even though symptoms continue. I asked them if this meant that my ovary uterus and bowel were all now untangled wouldn’t answer this. Been through menopause clinic as well, but I can’t take HRT so they’ve written me off. Saw gynae before Christmas due to increased pelvic but they said it’s all fine. I explained about the Mri showing now endo. They explained it means that there is no active endo. I scarring. I’m under urology anyway as my kidneys have been affected and my left ureter due to endo. I’ve now been referred to Gastro as I now have upper abdominal pain bowel had this since January 23.
I have severe bloating, pain every day, I still get cycle so I know when I’m ovulating. I get the nausea and the fatigue is crippling. At least I don’t get the bleeding but I now have more symptoms, including flushes and tearfulness. I’m now five years post menopause. According to the I no longer have Endo as the MRI was clear. However, when about it will be mangled inside they said the MRI isn’t clear. I’m using an oestrogen cream which I’m having to reduce the dosage as it has increased some of my Endo symptoms as well as hot flushes. The NHS just seems to pass you around so nobody has to deal with you and you are ultimately left to rot.
Thanks s exactly the same situation as me. MRIs don't pick everything up with endometriosis.
This is awful. It's the semantics around endo that are the problem. I have what consultants call "old endo" it's done its worst and left lesions and deep scarring - this is stage 4 endo that joins organs together. It's still a living disease underneath the tissue and it could wake up as it seemed to in peri menopause which causes utter chaos for many women. If you have lots of symptoms you need to be under a specialist BSGE accredited team who will decide how to support you. You also need progesterone (natural utrogestan) to balance the estrogen. Women with endometriosis should never take unopposed estrogen even after a hysterectomy. I'm 52 and having a hysterectomy in April as I'm all tethered and I'm hemorrhaging even on zoladex. We are not old in our 50s or 60s. Ask to be referred and speak to people who know this complex disease. There are some very good endo Facebook groups x
It's bollocks that it goes with the menopause frankly. The hormone chaos of peri and menopause can in fact drive Endo. The inflammation that accompanies menopause for many women around this time can throw Endo into a complete hissy fit. Have been there and got the T-shirt on that. Neither does endo resolve post menopause for all.
Try looking at Anti inflammatory diets like those in Heal Endo book by Katie Edmonds and do your research on menopause and endo with Dr Louise Newson's balance app . Lots of info . Pelvic floor therapy - look at @corerecoverypt for someone who specialises in pelvic floor work post surgery and with endo clients. It is very helpful and avoid kegels like the plague as it only tightens an already over rigid / tight / spasming muscular region.
Depending on the surgery and whether you have ovaries or not you may need to look at your hormone levels ( progesterone, oestrogen and testosterone) dropping being the driver of your current pain and bloating . Insist you need all the tests and don't settle.
Thanks. I'm following some of this already and it does relieve it a little bit but when its full force pain it doesn't hence going back to consultant
Endo doesn’t go with menopause. Mainly because endo can produce its own oestrogen.
You need someone that understands both endo and menopause - a massive challenge! I thankfully did find a lead gynae at bsge centre who did understand them both.
I had 3 ops for endo removal after hysterectomy and ovary removal.
Could you afford a private scan with someone trained to spot endo? It could cost around £450. There’s a well known clinic in London but also places around the country.
If you do need hrt then it must be oestrogen and progesterone combined - even after a hysterectomy. It’s in ESHrE guidance but most doctors don’t know it!
Was your gynae from an accredited BSGE Centre? If not, see if you can be referred to one. This biggest thing I leaned from endo peers is that normal gynae’s aren’t specialist enough to deal with Endo and also we need specialist menopause practitioners too. The search button on this website is a bit buggy so try different types of search if nothing comes up straight away. Sending you warmth. Good luck xx bsge.org.uk/centre/category...
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