active endo after hysterectomy and ovary ... - Endometriosis UK

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active endo after hysterectomy and ovary removal

Flydragon9 profile image
21 Replies

So abdominal hysterectomy and ovary removal 9 months ago and just been told that I still have high oestrogen levels with active disease and bowel stuck down. Again. Waiting to be injected into menopause, in the hope of stopping the disease. If it doesnt work, bowel surgery and stoma bag await. Has anyone else had difficulty stopping this disease after a hysterecotmy? Thank you ladies.

21 Replies
EndoJaz profile image
EndoJaz

Oh god its awful, I had hyst 2 yrs ago, was told ovaries need to stay in as too young for menopause at 41! Now awaiting appt to discuss shutting the ovaries down and removing them but I am scared this still wont be a cure and I will be in a worse state as will have menopause also to deal with. To top it off my April appt has been cancelled until August! Still havent had MRI results..3 weeks ago to see if bowel involved. Feel so deflated with it all. Did u have both ovaries removed? X

Clairey007 profile image
Clairey007

Really sorry to hear you're suffering with this horrible disease. But, hysterectomy isn't a cure for endo because the endometrial cells can grow outside of the reproductive organs. It may help for a while, but the nature of endo is that it can't be cured, so even after a hysterectomy it can come back. Also, adhesions/scarring cause a lot of pain for many women, and it's usually this that make organs 'stick' together.

Sorry, I can't help with questions about menopause.

Xxx

dasprior profile image
dasprior

I had a full hysto plus both ovaries 3 years ago. Had two massive cysts on both ovaries, pelvis totally “glued” together and my kidneys, bladder and urethra had to be “dissected” our of all the Endo. The surgeon did a great job and spent hours “rebuilding “ my insides. Best decision ever. The last 2.5 years I’ve felt the best and fittest I have in the previous 20! Still have some pain but my Dr thinks it’s just adhesions causing grief. Only bad enough to go looking for drugs about 1/month when I’ve overdone the physical exercise.

Must admit the pain has been increasing over the past few months and I’m scared the monster has rehatched and causing havoc. Not bad enough yet to want to have any more surgery to check it out and praying it is just adhesions.

I’m not on any HRT at all and the instant menopause isn’t too bad as long as I stay away from sugar. Hoping having no oestrogen will kill the beast too.

Good luck with your journey. Everyone is so different. I pray that my girls never have to go through this hell. Two miracle girls - 13 years of trying. I thank God daily for them.

X

endo2 profile image
endo2 in reply to dasprior

Sorry to hear about your experience. Wondering if I can ask a few questions. I had a partial hysterectomy 7 years ago and the last 3 years I have slowly gotten worse. The last six months have been really bad. It hurts to pass urine, constant pain on my right side. I had a deep pelvic ultrasound and it looks like the Endo is back in the pouch of douglas and the bowel. I have a feeling it involves my bladder as well. I originally had stage 4 Endo and Adenomyosis when I had the partial hysterectomy but I also have a frozen pelvis which means I need to have everything dissected like you. I am really worried about the pain and worried about having a colostomy bag. How bad was the pain after the operation?

dasprior profile image
dasprior in reply to endo2

It took about 3 months after my op for the pain to be totally gone. I’ve had 2 awesome years with minimal pain - just some “tugging” of internal organs with excess standing or exercise. Now I have constant low level pain in my pelvic area, back, hips and down legs that feels very similar but a milder version of pre- op days. Still not bad enough to go looking for drugs regularly but beginning to get me down.

Success really depends on your surgeon. Good luck with your surgery. I’ve been doing a bit of reading of the medical journals lately and they still can’t agree on the best method to treat post menopausal women after a TAH and BSO. Most agree no oestrogen HRT but the stats don’t even fully confirm that. There is a drug that can block the estrogen receptors on Endo but not proven. Would love to see a cure for this rotten disease.

Hopefully they can sort out your bowel. My brother had part of his removed, had a bag for a few months while it healed, then resectioned so no bag. They can do incredible things.

endo2 profile image
endo2 in reply to dasprior

Thanks for replying. From your previous post you said you have 2 girls . I have a 22 year old daughter. She has been diagnosed with Endo and Adenomyosis. She has massive problems. Just thought I would mention just to be aware when your daughters are old enough. Sorry to hear you still have problems.

dasprior profile image
dasprior in reply to endo2

Oh no. Poor love. Not a fun road ahead for her. Just praying they find a cure sooner rather than later. In my late 20’s when I was trying to have kids I came across a naturopath that worked wonders and got my body “working” properly again. It took 7 years of those herbs before I fell pregnant but in the meantime I felt human. I’ll see if I can find their website as I know they treat people by mail.

X

dasprior profile image
dasprior in reply to dasprior

naturalfertility.com/

They may be able to help.

endo2 profile image
endo2 in reply to dasprior

Thank you so much for your help. Hope you stay well xx

ccsmith profile image
ccsmith

It’s all our worst nightmare. We all know hysterectomy doesn’t cure things but for some it can make a massive difference too. I’ve been waiting my hysterectomy, ovary removal and bowel resection since last July. The consultant was clear it won’t be a cure but can make life more manageable. I have a fear I produce oestrogen even in menopause as I was still struggling after a year of zoladex. I hope it all gets sorted for you xx

Gwen172 profile image
Gwen172

I had total hysterectomy many years ago. I was put on oestrogen for 20 years as I was young. Fast forward to the present day. Just seen specialist in BSGE centre and he said we never give oestrogen to anyone with stage 4/severe endo. He has put me on tibolone for 3 months. If that does nothing then it’s excision. So be careful of oestrogen. Also removal of endo is surgeon dependant. Just found out that when I had hysterectomy the professor did not remove any endo. Thank god things are different today.

Good luck. You can message me if I can help. X

endo2 profile image
endo2 in reply to Gwen172

Hi Gwen

I had a partial hysterectomy 7 years ago. 3 years ago I started having problems but nothing was mentioned about HRT oestrogen. I took that for a 1-2 years not knowing this could cause problems. After lots of research on my own I have taken myself off the medication and now waiting for surgery. They think the endo is in the pouch of douglas and the bowel. I am having lots of issues with my bladder so I think there are problems there too. I have a frozen pelvis so they have to dissect bowel, bladder, possible kidneys to get to everything. I really don't want the surgery but can't cope with the pain.

Sunflower1968 profile image
Sunflower1968 in reply to Gwen172

Hi did the tibolone help? I was given that with prostap (chemical menopause) but it didn’t help me. I was just wondering how you are now? X

Gwen172 profile image
Gwen172 in reply to Sunflower1968

Tibolone did help for a few months but it’s back as bad as ever. Dr has put me on naproxen so see how that will help if at all. Still very unsure where to go next. Think I may pay for a laporoscopy with bsge specialist just to know where I am internally. Not sure at all about excision because from what I’ve read it grows back pretty quick. Wishing you all the best xx

Gwen172 profile image
Gwen172

I know. Why do gps not know that oestrogen can cause such problems. I have been 20years not knowing what was wrong with me. It can drive you to desperation. I have spent a fortune seeing various specialists and not one mentioned EndoMetriosis. Thank god for this group. In the end it was myself who realised that after all this time it was still that. I have lost the best years of my life as it’s so in predictable. I don’t want surgery either. Not at my age. Let’s hooe that tibolone will help. Are you being seen in BSGE centre. Finally I @m. I paid private to see specialist in the spire hospital Cardiff. Best £120 I have ever spent. It all makes sense at last. I am not going mad!! Best wishes to you. X

marti323 profile image
marti323

It’s possible that if the endo hasn’t infiltrated the bowels, that a resection is not needed and only a bowel reinforcement is needed. And even if a resection is needed, depending on location, a stoma is not always necessary. My second surgeon said my endo and adhesions were so bad, worst that he’s ever seen, and that he didn’t want to mess with it unless I was 100% okay with it because he is pretty certain that I’d need a resection. I’m so glad I got another opinion and the third surgeon I went to, said my case was only moderate to medium difficulty for him when he went in. He didn’t need to resect my bowels. He was able to unstick my bowel/uterus/ovary/tube and restore to normal anatomy. Even though I had an obliterated cul de sac and stage four endo. If a surgeon would have performed a hysterectomy, they wouldn’t be fixing the problem for me. All the other organs would still be stuck together and the endo will still be there. I suggest reading more about this on the Facebook group Nancy’s Nook. Just don’t post anything the first week. Read the files and articles provided. Read previous comments about hysterectomies. It’s a library of tons of info, it’s a god send. And you can go to center for endometriosis care’s website, there is a ton of information on there as well!!! Good luck.

bighug profile image
bighug

Had a total hysterectomy last year, so it’s been less than 10 months now and the pain is back just as bad as before, so frustrating! I was advised the surgery due to the amount of endo I had, I knew having the hysterectomy wouldn’t cure it, but was hoping I’d have some break from daily pain. I wanted to keep my ovaries if possible as I didn’t want to go straight into surgical menopause, my surgeon was able to keep them but could only ablate my right ovary to keep healthy tissue. Now suffering again, I’m confused as to what to do now, have the ovaries removed or try HRT, my GP is great, and has tried several painkillers to help me, but it’s not helping, I’ve not got an appointment with the surgeon again next month, and I’m still struggling to know what’s best. Hoping we all find some relief x

Angel71 profile image
Angel71

Hi Flydragon,

I am so sorry that your endo is back not so long after your hysterectomy. This disease is awful and realky unfair :( Is the endo on the surface of the bowel or has it inflitrated? I too had a total hysterectomy and both ovaries removed 5 years ago but I had to take HRT. I had been pain free for the last 5 years and finally regained my life back but in the last 2 months all the pain I had before the op has come back with a vengeance. I had an ultrasound scan and shows that the endo is back on the bowel :( I have now been taken off HRT and put on Tibolone to lower estrogen and see if pain dimishes, if no luck I will need to stop that too and see what happens. However I am not that optimistic as the pain is constant.

I had endo it on the bowel before and it had been shaved off with excision. I too was scared I could end up with a stoma but I didn't. I think dr's have to warn that if there are complications it could happen, but it is not often the case. I understand your worries though as I am on your same boat and don't want to even think about another op after having had a total hysterectomy.

Here for support. x

Flydragon9 profile image
Flydragon9 in reply to Angel71

Hi, Thank you for your reply. Much appreciated. Endo is of course, through my bowel, so if Prostap doesn't work, I have been told it's surgery. I ended up on half pay following the hysterectomy, and just cannot afford to be off again. As if battling endo isn't enough. On Prostap a week, a bit agitated, but nothing earth shattering has happened yet, I don't know when symptoms start. I feel under a cloud. My consultant has said no hrt, but I'm 49. It's a beautiful day today, Easter Monday, I'm hiding in the house, listening to the rest of the world enjoy itself. I truly hope you get on top of all this. The stress of it, on top of the physical side is just too much. Xx

Angel71 profile image
Angel71

Hi, I am so sorry that the awful endo is through your bowel and I hope Prostap will work for you.I've never tried it but I've heard it working for some people.J can imagine the stress of worrying about work and pay, as if this terrible disease wasn't enough. I can understand how you must feel , I have had to stay in the whole day today lying on the sofa with a hot water bottle and taken lots of pain killers as the pain is awful.People who don't suffer from this horrible beast can't understand.

Take care of yourself and hope the Prostap gives you some relief x

Jraid profile image
Jraid

Hi,

I know this is in reply from a post 11 months ago but I’m only just coming across it now.

I wanted to know how you were getting on now?

I too had a total laparoscopic hysterectomy in July 2018 due to endometriosis Stage 4 and adenomyosis. I ended up with pain from 7 weeks after and I saw my consultant at 3 months and informed him of the pelvic pain I was experiencing. He told me I probably had IBS 🙈 I couldn’t believe my ears he is meant to be an endometriosis specialist!! He said I was discharged from his care and would have to go and see my GP for a GI referral!!!!

I went to my Gp in tears as I had also tried to return to work but couldn’t even walk after 5 hrs on shift. He referred me to another gyne out of area.

A few appointments and scans later I had a laparoscopy on Nov 26th, 17 months after my hysterectomy and the endometriosis had grown back on my bladder and bowel. My right ovary was also stuck to my pelvic wall. My surgeon removed the endometriosis and unstuck the ovary.

He reassured me it wouldn’t grow back as he had removed all the endometriosis. He said he left my ovaries as I’m still to young to have them removed at 42.

I have recovered and after a year and 1/2 of suffering with chronic pain I feel I’m getting my life back. However in the last week I have been experiencing some pain again after going back to classes at the gym on top of working full time and all house chores. I’m hoping I’ve overdone it and a rest will put things right but at the back of my head I’m worried the endo is back again 😢.

I’m hoping you’ll have some update on how you are dealing with things now??

Good wishes

Áine x

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