Hello again everyone it has been a long time since I was on, I don't really know if I should still be posting on this site as of the 14th January I Had a Total Hysterectomy, I had 38 staples 4 up passed my belly button. It has been 5mths since the OP & I am still in pain, but after I went for my 6week check up they told me they had to leave a bit of my Cervix could there still be Endo on it??? I still get really sharp pains in my side & be very tired, Can anyone Help...... Or Has anyone else suffered.

14 Replies

  • This could still be endo I had hysterectomy in march they removed everything apart from my right ovary as it is embedded in my bowel. I have since needed an operation to remove a large cyst and endo removed and am awaiting an op to remove another large cyst that at the moment is 9 cm and they are having a bowel surgeon present as they are going to try and remove my right ovary at the same time. I would go back to them and tell them that you are still in pain as hysterectomy isn't a cure for endo and it can still cause problems hope you get sorted soon

  • Hi. Do u both mind talling me how old u r. It's just I keep asking 4 a hysterectomy but keep being told I'm 2 young I'm 32 x

  • I have had stage 4 endo for 15 years and I'm 30 now! Lost my husband 3 years ago anddue to the severity of my endo I will probably never have children! I could only have imagined having children with him! I am in pain daily and I bleed every single day despite zoladex, merena coil, depo provera and various different contraceptive pills and apparently I'm still too young!!!! Ra! I know where you are coming from! I don't get it!

  • Hi I would go see someone else I am only 28.

  • Hi Gay333, I am 38 passed in February & have no Children.

  • I'm so sorry that I am only getting back to you now, but since having Hysterectomy I have been feeling like shit, very depressed don't want to talk to any one and locking myself away, I know this is bad but I am trying to deal with it, But the answer to your question is I am 38yrs old Not Married and No Children but this was my only option as they tried everything for me but I just couldn't take it any more as I had been bleeding everyday for nearly 3yrs and the pain was getting unreal, so I made the decision to go for the OP For my own health and peace of mind. Hope this Helps and good luck and again sorry for the late reply. Xx

  • Thank-you spammie85, I made an appointment with my Doctor for 2nd July so I will talk it over with her then. I know exactly what you are going through as my Endo was stuck to my bowel I had cyst after cyst. The consultant told me that my inside was like concrete. Thank-you so much for your kind reply.

  • Hi yes I have had a hysterectomy. And I still have problems. Yes you could still have endometriosis ,endometriosis is like a seed and if you have a bit as small as a pins head this can start and spread and cause more pain

    I had my hysterectomy 20 years ago I was 32 years old now I have endo on my bowel bladder kidneys and lungs the pain is so bad at times you need to go back and see your GP or if you are still under the hospital go back there

    Some times the doctors can be very hurt ful what they say as even now 20 years after I had my hysterectomy they still do not no a lot about the disease

    You also could become a member of endometriosis society they have groups and leaflets etc which could help

    I hope that this has helped you if you would like to email me any time you are more then welcome

  • Hi Franco12345, thank-you so much for your reply. I was given no option, I bleed everyday so bad I was on Iron for so long it was , so painful. Had a few courses of Zoladex then on to Tablets then back to Zoladex then had to get the Mirena coil in, but after all that the Hysterectomy was my only solution. Thank-you for all the links & society groups.

  • Hi Franco..... did you have a total Hysterectomy ? I had everything removed 12 years ago but have been having problems, especially over the last couple of years and they more or less say it won't be endo now because I had my ovaries etc removed too. Could it still be on my bowel ?

    I have been sent round in circles between gynae and gastro teams for the last two years !

  • Hi bob bluesy

    I'm so sorry to hear that you are still suffering. My own experience is , I had a total abdominal hysterectomy (was carried out for other reasons, it wasn't an endo surgeon, but a very experienced gyn and bowel consultant ) suffer with immense pain now more than prior to surgery. I had an MRI and found that I still have endo, adhension, which im down to have removed in a couple of months. I'm on a combined HRT which has been increased 3 times now, and each time I've a sudden increase in energy, mood improves, etc. I've seen a pain team, but its a virous circle distract away from pain, do something, more tired, pain worse, more tired, low mood. Ive been told by 2 consultants now it is very common to have to have further surgey after an open hysterectomy to remove, remaining fragements of endo and adhension, so a possibility for yourself. I wish you well, let me know how you get on.


  • Sorry to hear that you are still in pain. Endo is often present in the peritoneal lining of the pelvis. Although a hysterectomy will reduce the hormonal aggrevation of endo, any remaining endo in your pelvis can still have left scarring or may be responding to the estrogen like chemicals and pollutants in our environment . A second cause of your pain might be the scar tissue and adhesions created by surgery. Often massage and stretching would help to ease this type of pain.

    I hope you manage to have a follow up with your doctor to discuss this in more detail.

  • Hi, a hysterectomy is not a cure for Endo if you have it in places like your bladder, bowels or any other organ as it feeds itself and grows from there!! My sister has had a total hyst years ago and she is still in the same pain as before as her Endo is on the bladder and bowel. Her case is the worst ever recorded in Germany and she is on a pension now as she can't leave the house to work.

    I have Endo on the bladder as well and my partner and I are on the IVF list as my fallopian tubes are blocked. I thought about a hysterectomy after IVF as well but will not ever go for it as I know that in my case it most likely won't help.

    Best of luck to all us ladies out there :-) x

  • Hello Ladies it has been a while since I was last on as I have found myself getting very depressed after my surgery, the consultant has left me to be taken care off by my own GP. So my GP will Not put me on HRT as the Consultant had advised Her that this could feed any Endo that was left, so She is sending me to a Bone specialist so they can see what is best for my Bones. I'm so feed up as I thought once I had the surgery I would feel a lot better but the only good result is that I have stopped bleeding everyday, the pain is still here & I still can't sleep also I am 2 dress size's bigger than I was before the OP, I use to have a waist but Not any more & I still get that bloating feeling & find it still hard to go to the Loo Bowel way's. I hope all you Ladies are keeping as well as can been. Godbless and takecare. Hear from you all Soon. Xx

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