reactivation of endometriosis: Has anybody... - Endometriosis UK

Endometriosis UK

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reactivation of endometriosis

tiberius37 profile image

Has anybody else had endometriosis reactivation after full hysterectomy, like myself i am shocked and gutted been in so much pain for 2 yrs now

25 Replies

Hi, have you had endometriosis confirmed on a scan or has it been seen during a laparoscopy?

tiberius37 profile image
tiberius37 in reply to Nikkky

They did a MRI scan as the gynaecologist didnt want to do a laparoscopy because she said without my records from when i had hysterectomy she could cause more damage to me . Had a ct scan last year but was told not detailed enough

Nikkky profile image
Nikkky in reply to tiberius37

It’s devastating when you think everything is okay and then it comes back again....I really do empathise. I’ve had a similar situation in that I had a total hysterectomy 4 years ago and everything apart from my right ovary was removed. Afterwards I developed painful adhesions in my left side and was told nothing could be done. Last year I had my oestrogen level checked and as it was borderline menopausal I started HRT. Shortly after starting HRT I started with bowel problems (bloating, diarrhoea & pelvic pain every day). I recognised this as a return of endo symptoms as I’d had them for many years before my hysterectomy. It’s a strong cramping and sore feeling all of the time. I stopped the HRT for 2 months and it turned out that my oestrogen level was pretty high and I shouldn’t have been on it in the first place! I really hope they can remove the endo for you. Can I just ask- did you keep your ovaries when you had your op? And how did you persuade your consultant to do an MRI? I just get fobbed off because they don’t believe I can still have problems after having a hysterectomy. I know otherwise and I wish they would just be more honest about endometriosis and the fact it can’t be cured.

tiberius37 profile image
tiberius37 in reply to Nikkky

i was advised to have the ovaries removed or i would be back in hospital in a few years . I had a flexible sigmoidoscopy done at the beginning of the year and nothing was found , the gastroenterology dr said it was probably my endo flare up , because ct scan and ultrasound had all shown nothing . I was lucky my gp referred me as a urgent referral last sept but still took 6mhts for an appt The pain is shocking i can go 3 days with no bowel movement then be crying when i do go

Hi I had a Hysterectomy in November and still in pain, although for me the abdominal pain has always been there and there is less middle pelvic pain now the uterus has gone. I saw a different Endo gynaecologist, they did an MRI which showed small bowel loops tethered to the pelvis. They don't want to do anything and say it's down to op, even though I have constant abdominal pains. Yesterday I saw a colorectal surgeon, who sees a lot of endo patients, who is happy to operate and check all the bowel area. This was never checked at the hysterectomy when I was expecting that to happen. The colorectal consultant is going to speak to endo gynae and may do a joint op. They don't go by scans, adhesions are notoriously difficult to see and they still prefer the naked eye.

NICE guidelines say that all areas need to be checked and any endo that can bee seen removed.

Have you requested your medical records from the hospital? If you haven't I'd reccommend this and see what was done.

If you aren't under a pain clinic ask your GP to refer you, they can possibly help depending on what you've tried.

I hope you feel better soon.

I got seen by pain clinic when i was in hospital last year , they couldn't offer any different pain medication , i am currently taking tramadol started on 2 a day now up to 4 . im waiting for next appt to gynaecologist , who has requested my medical records from the hospital where op was done 18yrs ago . I feel cheated that i was never told that there was a chance it would regrow back due to taking HRT . My worry is that i will have to have my bowel removed because of the problems it is causing

Has anyone mentioned residual nerve pain? It's why Im on Amitriptyline and Pregabablin, sort of help. I've also been given Oxycodone instead of Tramadol, I think it's a bit better for me, the nurse said that taking paracetamol regularly helps the codeine work better. GP wouldn't have given the oxycodone though. I think it's only recently they realise that endo can act of it's own accord. In Edinburgh and the research they've done shows that Endo cells act like cancer cells, it's one of the reasons they have been testing a cancer drug. Endo is in the top twenty NHS most painful conditions.

I had everything taken out, even told the gynae before to make sure it was all taken out. Until they go in again I don't know if it's endo or anything else. I'm hoping that my bowel is ok and just a few adhesions.

You can request your medical records, there is usually a form on the hospital website these days, it's free of charge. You can get GP as well, they usually want it in writing with a form of ID. On the hospital site I had to upload ID as well as the form. They say it takes up to 28 days.

I don't know what my GP will think of me going to yet another endo team when he gets a letter.

I hope you get something sorted soon.

Did you take oestrogen hrt? as this can stimulate endo even after a full hysterectomy, ive had this surgery last week and was adamant i was going on hrt for the health benefits of bone disease but once the gyny explained about this which i didnt know about so im not willing to risk the reoccurring of this painful disease after 20 yrs defined by it.

i have the combined hrt , so i get both because i was 28 at the time of op was told i would need to take hrt

I had hysterectomy and oopherectomy 17 years ago and I still have severe endometriosis pain. I also had excision of a lot of endometriosis at the same time. It was my 5th operation. I don't believe there is a cure for endometriosis at all and I've never touched HRT because it seems ludicrous to have all that done then add back the very hormones causing the trouble. I have osteoporosis because of taking Zoladex injections for years. It's time doctors were honest about this illness. xx

Butlerballs profile image
Butlerballs in reply to Dogmad6

Sorry to see you are still in pain, no there isn't a cure for endo the medical professions are still learning of this disease, i was in the dilemma of taking oestrogen hrt for the osteoporosis but as you say the organs that produce oestrogen have been taken out as thats the stimulator for endo why take hrt to risk this, I had full hysterectomy last week, do you now if there is an equivalent for osteoporosis?

Diane.

Dogmad6 profile image
Dogmad6 in reply to Butlerballs

Sorry I don't know the answer to that. I got bad reactions to all the osteoporosis meds so I have a high calcium diet and no other treatment for it. I'm doing ok although I know I have it xx

I have been waiting for an *urgent hysterectomy since 2017 and been asking since 2012. I’ve been in pain since I was 8 years old, the pill masked a lot of this from 11 to 23… by 25 I was in so much pain, by 29 it was way too much, they finally after a locum gp finally pushed hard, gynae finally did a scan and it showed a 7cm endometrioma! This was 31st October approx 2017 it’s now July 2021 and I’ve been told this week that even though I’m riddled, my bowel is infiltrated by 10mm and twisted and pulled everywhere and my Fallopian tube is literally double the size filled with blood and I’ve been in constant pain from 2016 that I have to wait another 12 months and continue on Synarel for that time, even though I’ve been on it for 6 months already!

Reading this has scared me!! No one has spoken to me once about hysterectomy/hormones/ reoccurring risk etc. I knew it could reoccur, but it seems it really did for you all. I was considering leaving an ovary because I’m 34 ( I’ve had my children) to stabilise hormones naturally but it seems that may be futile??

All I’ve had in that window was a junior surgeon open me up during a Lap for 30 mins and decide it was to severe and close me again in Nov 2019. If he had of done an MRI upon discovering the endometrioma he could have seen the severity and it would have been cheaper than a Lap.. 2 years after discovery. I’ve been out of work since 2017 as the pain was too much and anticipated returning in 2018 after surgery but here I am still can’t return thanks to the NHS and Gynae surgeons! Think they forget this is our lives here… if it’s like cancer treatment it as such!

Would you guys have a hysterectomy again knowing what you know now?

Primarily the pain is my left side from the swollen ready to rupture Fallopian tube, the ovary and adhesions etc but my right side hurts maybe once every two months.

Hugs to all the warriors we don’t deserve this disease or the ignorance that seems to follow with the professionals! Xx

My heart goes out to you , even though i was only 27 at time of op and was not lucky enough to have children i would deffo have the op again . i have had 16 yrs pain free . Before the op i was like you no quality of life

Sorry to hear this. Several years ago I opted for a hysterectomy at 34 years old, but my consultant told me there was a chance it could still return even after. This made me change my mind. I've decided to wait until I'm In my mid 40s before I make that decision now as I dont cope well with the menopause when its medically induced. The thought of of that for god knows how many years puts me off. I'm now waiting for my 4th lap to remove stage 4 endo..ill just put up with the painkillers for a little longer..its been 16 years of painkillers..🙄 . Why do us woman have to suffer soo much. Take care x

If ovaries are not removed you will still have symptoms, there is a small chance that it can come back when ovaries are taken out as well .

I’m considering keeping the right ovary, but the left I can’t anyway it’s gone as it is. Left is damaged, swollen. Cysts in and on it and the tube is filled with blood. But I wonder if only one will cause as many issues, or just keep it balanced.

Hysterectomy will not cure endometriosis. There’s a Facebook page called NancysNook, it’s private and it’s educational, I have learnt so much more about this permanent disease through them. Go take a look, there’s also one called extrapelvicnotrare, the same type of thing, so much information that regular obgyns don’t know.

You’re right, nobody can say that a hysterectomy will get rid of your pain as it’s not that straight forward. It also depends on what is causing the pain and it can be quite complex. Have you had any other investigations since your laparoscopy to confirm what is causing the pain?

I am in the same situation,I’ve asked for hysterectomy now ,my dr has agreed but carnt understand why I’m still in so much pain on rite side when ovary was removed,he’s now going to refer me to collarectal clinic as he wants to b sure it’s not elsewhere,he said otherwise surgery would b no benefit to me 🥲

All I can say is don’t rush into the hysterectomy thinking it will solve everything, especially if you really want children. Have another laparoscopy and hopefully that will help this time. Ask lots of questions too.I had endo, adhesions, pelvic congestion and a scan showed possible adenomyosis. Although I didn’t rush into having a hysterectomy it was a much easier decision for me as I’ve never wanted children. It was worth the chance of getting rid of the pain and was the only option left. It got rid of the burning and cramping womb pain from adenomyosis but I still have daily pain where my ovary was removed, central pelvic pain and bowel problems. So the pain is a bit better than it was but still bad.

Best of luck.

You come to realise that not even a specialist can understand the pain and the impact it has on every area of your life, because they’ve not experienced it. It’s not just the pain.....it affects your energy levels, your mood and self esteem. They really don’t have a clue!

Have you been on prostap at all?

Yeah, same here. I’ve seen various NHS general gynae’s and after the last private consultation was a waste of time and money I thought “right, I’m going to look up an endo specialist”. I found online that the last one was actually listed as an endo specialist at my local NHS hospital- she never mentioned it. She didn’t mention endo at all or anything about the possibility that my bowel endo might have returned or been there all along. She went along the inflammatory bowel disease route and of course the tests came back normal just as I knew they would! When I was originally diagnosed nothing was explained. It was as if it had been treated and solved and that was it. Almost like they don’t want you to be well informed because you might cause them problems! They treat me like I’m an unusual case, coming back saying I’m in pain, but I know I’m not. I think the best thing is to educate yourself, have a plan of action and speak up for yourself.

Hysterectomy isn’t the answer as some would point out, but sadly for many of use there are numerous symptoms and co existing issues because of the endometriosis that can be helped with hysterectomy. It may not *cure endometriosis as nothing has yet been discovered as a cure and hormones just increase the issues in my opinion. Personally, it’s the only option left to me and if it helps 40% it’s better than zero. Everything has its risks, but I know others who’ve had hysterectomies and been free for years, others not so lucky but they still got relief from bleeding and hormones by the bucket load. But everyone is different! It’s always about the individual xx

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