AFTER HYSTERECTMY need help and advice

hope someone can help ?? I have had endo severe stage 5 for approx 15years I was diagnosed with everything but endo over the years so went to see a endo specialist had a laparoscopy to reveal severe endo which involved my bladder and bowel, they were all stuck together, I had a 9 hour operation to excise all endo and unstick my organs and excise my bowels but unfortunately after 2 years it had started to grow back so they said I had to have hysterectomy but left my ovary's as I am too young ( I was age 32 ). I still have period symptoms every 4 weeks but recently I am having horrendous bowel cramps and diareoah as I used to before. I really don't know what to do with myself with the cramps, the only way to describe the pain is Labour pains!!

Has anyone else has surgery and hysterectomy and then few years later started with pain again???

I just know my body and the pain and Ive been praying its not endo but I know it is.


21 Replies

  • I had my hysterectomy 8 years ago .... With ovary removal .....and I've just started with endo pains again :-( see my gynae on 8th September .... So will ha e to wait and see.

    It's a horrid time isn't it ... I really hope you feel better soon and it's not the dreaded endo xxx

  • It's so good to finally hear people with the same pain and problems in at doctors today so I will ask to be referred back to hospital . Everyone that suffers I really do feel for its such a horrible disease and it looks like we will never get rid of it xxx thanks for your advice I hope u get on ok

  • Thanks .... When I went back to Gp with the pains she didn't k ow what to say ! Didn't know what it was ... I had to say to her I think it's endo and I want to be referred bs l to gynae. She agreed and so I'm now waiting.

    I take it will be another lap ..... I hope so .... Don't want to wait for scan results ... Just want to be opened up and get the damn endo out !!!! Keep me posted xx

  • Jelly1967

    Please let us know what they say and how you get on.....I have gone round and round in circles between Gynae and Gastro and they say it's highly unlikely after total hysterectomy to still have endo but I am not totally convinced that some of the pains I'm experiencing are not Endo as they don't seem to come up with any other definite answers apart from IBS.

    I have noticed on the IBS community there are LOADS of women told they have IBS only to find out at a later date they have Endo.

    and Zoerother if you still have an Ovary I would sadly say I think you are right to suspect Endo is back :(

  • Hi di

    Well I managed to see my gynae last week . He says could be endo , ovarian remnant syndrome and basically no idea why I getting the pain !!

    Yesterday I had MRI , ct scan Tuesday and had lots of blood and Urine tests. Back to see consultant Friday for the results and will take it from there!


  • My MRI hasn't shown anything abnormal so they are just putting mine down to IBS. Hope you get somewhere, whatever is causing your problems and get them sorted out. xx

  • I am sorry about that Di . We know our own bodies don't we and not all endo shows up anyway,

    Can u go and see another gynae and get a second opinion ? I take it u haven't had another lap? What symptoms do u have ? Xx

  • I too had this problem; I had both ovaries and uterus removed in 2004 aged 32 after persuading the doctors that given my four miscarriages it was unlikely I would have a child and therefore ought to remove the organs causing me the most problems (I was also diagnosed with PCOS). However, although being pain free for about six years I noticed the pain returned - at relatively low levels - around 2010 but then by 2012 the pain was almost at the same levels pre-surgery.

    Now I'm disabled (I have a blue badge and require a rollator/walking stick to move) though thankfully I am very lucky and work for an organisation which allows me to work from home sometimes. I am awaiting an endo specialist and have been referred to a pain management clinic again; however, I am not particularly hopeful given that I knew this was a possibility before the 2004 surgery but went ahead in any event.

    There have been several clinical studies which found that (a) endometriosis cells can regenerate on their own and create their own nerve endings resulting in pain and (b) even without ovaries, the body still produces levels of estriodial (estrogen) and where pockets of endometriosis have remained in the body, such can recur and cause additional problems.

    I'm disappointed to say the least (even though it was always a likelihood that the disease would return) because I spent close more than £160k over the fifteen year period before my hysterectomy/oophorectomy on treatments including hormones, laser surgery, acupuncture, hydro and other types of therapy, etc. I honestly feel that there is little effective treatment. Having just turned 42, I personally feel that the support out there for us is so poor it isn't worth bloody going forward. I'm not prepared to spend another decade living with this disease.

  • Hi Maria, I notice in your post that you say there is clinical evidence that post hysterectomy endo can rejuvenate. Just wondering if you have a link or similar to this. I saw a gynaecologist a few weeks ago who insists as I have no women's bits left I can't still have endo, would love to have clinical evidence I can shove under his nose to prove him wrong!

    Thanks loads xx

  • Will try and dig it was an American study but I should have the articles somewhere...

  • That would be really great thanks so much 👍🏼

  • Thank you so much for sharing your agony with me, its so good to hear that im not only one suffering. There is no help out there for any of us the doctors always suggest hysterectomy and even that only helps for a few years. I had my son at the age of 20 which was unplanned and unexpected but I suppose looking at my endo situation it was meant to be. My heart goes out to all of you that have struggled to conceive due to this horrendous disease.

    There must be someone out there that help us all.

    I really cant bear the thought of going backwards with my pain, its the worst thing ever and not alot of people have even heard of the disease so when you say what is wrong they don't understand it they havnt got a clue what pain it causes.

    What are we meant to do have all of our internal organs removed ? I would rather have my bowel removed than have this agonising pain.

    : )

  • I have had severe endometriosis for many years and finally succumbed to a full hysterectomy despite my consultant saying it would probably not help at this stage 2 years ago. In fact I had to get my gynae consultant for abnormal cells to perform the surgery as my endometriosis consultant refused bless him. I had a bowel ulcer 5 years ago that resulted in me being on life support and so we took a bowel surgeon into the operation in preparation which was amazing of them but unfortunately all the endometriosis swelling had covered up a huge abdominal hernia as a result of my intensive care surgery that was obstructing the bowel. I am still recovering from the major surgery required to repair my abdominal wall 9 months later ( was huge operation) but the more I recover the more my endometriosis is returning. I said after my last operation that I would never have surgery again but now I'm begging my doctor next week to find me a endometriosis specialist as gynae have done their part. I live in Devon though and I don't think we even have these specialists here.

    Hearing other people are suffering the same as me is actually quite refreshing, no offence guys but I thought I was going crazy at this point. How can endometriosis be this painful when you've had full hysterectomy?

  • Spacequeen I am in Devon too !

    I had a total Hysterectomy 12 years ago but have since been going round in loops between Gynae and Gastro with problems which they say won't be Endo after this length of time after the Hysterectomy. At the same time they are not really getting my problems sorted either and I am not convinced that some of the problems are not caused by Endo.

    I think there may be specialists Bristol ?

  • Hi Di-MC

    So sorry to hear you are suffering as well. I actually have the nurovirus at present so really fed up but immune system is shot to pieces. Whereabouts are you in Devon? I spoke to my gp on Thursday and she appeared baffled when i mentioned endo specialists so guess we have not caught up in Devon still. She has referred me back to my gynae consultant though to see what he suggests. I am quite chuffed with this however because he is luckily aware that i have endometriosis on my bowel and I had a fantastic relationship with him so im hoping he will be happy to advise next stage. I know the pain is endometriosis and I am being quite firm with that but it appears we just don't have a solution like others up country. Endometriosis grows until menopause I believe so if you have not hit menopause then surely endometriosis if its on other organs will continue to grow? My gp appears to confirm this So surely the same will apply to you. Have they performed any investigative surgery on you to confirm it is not endo or are they just totally fobbing you of? I am not allowed to mention my old consultants name but trust me when I see him I will be pressuring him slightly I guess as to why we do not have any support here and see what he suggests for us all so i will obviously pass this info on to you when i eventually get it and until then i guess we suffer bless us.

  • Hello all! :-) Did you have your endometriosis treated properly ie excised = cut out at the same time as your hysterectomy ladies ? A hysterectomy and / or removal of the ovaries is not really the correct treatment for endo - this is now an old fashioned notion. The leading endo specialists now believe in removing the disease not the female organs. I would suggest that you look into getting referred to one of the BSGE Centres to see a specialist and discuss it with them. Please be aware that not all specialists are equal so do your research and choose one of the better ones!

  • NO Arcadia I did not and I have never even heard of endometriosis being treated in this manner before or even been aware that these centres exist. Seriously I have learnt more from this forum in a couple of weeks from you guys than i have learnt in 19 years. It appears that we do have 2 centres in Bristol and one in Cornwall which are both a good hour and a half away at least but it will be interesting to see what my old gynae consultant has caught up with since i have been away and what he advises next. I know he will give me the best solution possible but we appear to be so behind here in Devon. I actually miss my old consultant because he did listen to me unlike the consultants since and he has popped up to see me when i have been on other wards but I really do not believe that we have the knowledge here and that is so unfair on girls that are just starting their awful journey of endo. I do not want anybody suffering like i have so these guys need to be listening to us.

  • Hi . I had a 9hour operation to unstick all my organs and remove all endo which I had to fight for on the nhs. This worked for 2 years but I started with pain again and it was growing back so next step was to remove again and hysterectomy but I'm nearly 3 years on now and symptoms are back.

    It's such a horrible disease and reading some people's comments looks like we will never be free of endo !!!

    It is defiantly helpful knowing that we are not mad and we are all in the same boat.

    I've been to see gp to get referred back to hospital I'm just hoping that they will do another lap and remove endo from my bowel 😩

  • Oh my goodness there are a few of us out there suffering the same thing . It is awful but nice that we can share our feelings and stories.

    Regarding one of the posts that hysterectomies should not happen for endometriosis . I totally disagree . I had four laps and endo was excised but unfortunately it was stuck everywhere and the next option was for hyst and oopherectimy. My surgeon is one of the best in the country for gynae and infertility so I knew I was doing the right thing. Nope I couldn't have children due to endo and had my hyst in my 30's and it was an awful time, but I have had 8 wonderful pain free years .... Climbed mountains, ran 5k's for charity , park runs etc . They now think it back and I know I will get this sorted.

    Positive thinking everyone and reaching out to all of those who are suffering . Still finding peppermint tea one of the best things !!

    Keep writing and supporting each other ladies xx

  • I'm glad I had the hysterectomy despite its recurrence I did have several good years and to be honest, I am pleased I no longer have to worry about periods - if nothing else it saves a fortune on tampons/pads!!

  • I had a hysterectomy 3 years ago due to endo, I was 43 and had everything removed.

    I recovered well and did feel better I wouldn't say I was completely free from pain, but my quality of life was better.

    Then after 2 years I started to get the familiar pains return mostly pelvic pain. I went back to my GP who has been fantastic throughout my diagnoses, I started to take more pain killers, she decided to referee me back to my gynecologist saying she suspected that the endo had returned and I would probably have to have a laparoscopy.

    I saw him in March this year and said he would do a laparoscopy to see what was going on.

    I went in on the 11th may , when I woke up he said that there wasn't any Endo but I had a few Adhesions which were attached to various places, the pelvic pain was probably due to nerve damage from the Endo.

    I am know on some medication which helps with nerve pain it's called gabapentine. I wouldn't say I'm completely free of pain but it helps, I'm just learning to live with it .

    Only people who suffer with it truly know what it's like.

    I hope you get some answers and some help x

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