Big Decision

Just had the results of an MRI and discovered I have the most extreme form of Endometriosis. It's everywhere, I have been asked to make a decision about having surgery which may involve removing the ovaries and possibly part of my bladder. This would mean I have a colostomy bag. As a newly single person, this really scares me. Apparently my ovaries and bladder are covered in sticky residue (endo) and have stuck internally in a slightly different position. Has anyone had this kind of op? I would really appreciate feedback. It seems like a huge decision ..... X

16 Replies

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  • Are you in the UK and if so what area? If so are you being treated in a specialist BSGE endo centre or a general gynaecology department?

  • Hi there, yes in the UK, being seen in Oxford. I have the top gynae consultant there and they are a specialist endo centre, not sure about the Bsge bit though. He tells me I'm in the best in the uk?!? But maybe they all say that :)

  • If it is the centre at the John Radcliffe then it will be the bsge accredited centre. A colostomy bag would very rarely be permanent even with the most severe endo. Your should ask for their statistics for complication rates and colostomies. It will all sound very scary but the centres do these complex surgeries all the time. Are you in a lot of pain and how old are you?

  • Hi yes it is John Radcliffe, and they did say the op would be reversible. I just forgot to ask how long I would have it. Quite a lot of info to take in, when at the time I was just relieved it wasn't cancer. I am 44 years and been in pain since I started my periods age 14. I have learnt to get on with it, but in the last 10 years I sometimes vomit and have fainted with the pain, sometimes it just knocks me off my feet. I guess everyone with stage 4 endo, feels the same :)

  • I was diagnosed with severe endo back in january - I am now being seen at a bsge centre in London. They have found that the endo is more severe than initially thought and are suggesting hysterectomy/removal of ovaries plus excision of extensive bowel endo which will most likely require a colostomy, plus a stent in my left ureter as I have a large growth very close to it.

    I've been on various hormone treatments since January to give me some pain relief and give me time to think about surgery. I'm 38 and not ready for a hysterectomy and taking it one day at a time.

    Did they offer you any sort of treatment in the short term? A few months breathing space can really help. It is such a big surgery and such a big decision. x.

  • Oh my goodness, this is very similar to myself, I also have a lump that needs to be removed "to rule everything out" I have been given 6 weeks to decide, but even if I say no, they say I could phone anytime if I still want the op. I agree it's a massive decision to make and just on the back of a relationship break up too. I could have the option of hormone treatment, but I have never responded well to hormonal drugs, so they have almost ruled that out.

    It is such a relief to finally talk to people who are in the same position, my consultant guided me to here and told me to ask this question. i feel I am in good hands with him and that's a first for me.

  • I have never been keen on hormonal treatments either - abandoned the pill in my early 20's because I could never get on with it. But I had a really rough year in 2015 struggling to get diagnosed and the treatments have helped, I was at a point of rock bottom with the pain having been left to deal with it on my own for so long. I need more pain relief for my periods than I needed in labour :/ The hormone treatments have brought the pain down enough that I can manage it at home.

    I'm waiting for a date for an initial exploratory lap as the BSGE consultant has said it will take more than one surgery at their first attempt to excise it as there is just so much and some of the nodules are large - I have one in particular on the bowel which is the size of a golf ball which is compressing the bowel and causing constant constipation. It really is rubbish.

  • I completely relate to this in every way :) I had no pain relief for labour, which is extraordinary and they said to me at the time that I must have a high pain threshold. I still avoid pain relief but sometimes I need it. I just don't want to go through the pain of an operation to find I still have the endometriosis or that it or it comes back. For me now, the pain is horrific but the bleeding is on another level that I have never experienced before. My family history would suggest that I have another 10 years before menopause .... Thank you for sharing your experience, it helps to know I am not alone in this :)

  • Hi. I am sorry to read about your recent diagnosis and the decision that you now need to make. I am recovering from a total hysterectomy in response of aggressive endometriosis and asbestosis. Illiymyosis was also mentioned which I have never heard off. Anyway, I was treated by an Endometriosis specialist at an accredited centre, thank goodness. I was warned that I could potentially have a colostomy bag for three months if my bowel had to be operated upon. This would be reversible after this time, once the colon incision had healed. Fortunately I didn't need this as my surgeon was able to shave the endometriosis from my colon. I had a stent in my urethra and excision of endometriosis from my bladder.

    I was discharged the following day and my recovery has been brilliant. I only needed paracetamol and brufen for aching, I cannot call it pain, for a couple of weeks post op.

    I am in surgical menopause which is a learning g curve. I cannot have HRT as the severity of my endometriosis indicated that my oestrogen levels were high. This is why it took 4 weeks post op to experience menopause symptoms.

    Personally I am in a better place and state than before my operation. I think dependant upon your experience of endometriosis informs your response and recovery. My only regret is that I hadn't had it done sooner.

    Good luck. Oh, if you haven't already, have a look on the hysterectomy site, I found that a hystersisters helpful x

  • Sorry but my last post should read ' adenomyosis'.

  • Thank you so much for your response, it's certainly good to read about a positive experience. I will take a look at that site, thank you .

  • Hi

    Your story sounds very similar to mine. I was diagnosed with severe endometriosis in December last year. (I am 42). My bowel, ovaries and Fallopian tubes were all stuck together, I had an obliterated pouch of Douglas and endo on uterosacral ligaments. Following laparoscopy I was referred to BSGE centre for further surgery, I was told that due to bowel involvement I would possibly need a colostomy bag which would only be temporary and also have to have one or both Fallopian tubes removed. Well I had the surgery a week ago today, which took 5 hours, where they completed excision of all the endometriosis, disc re-section of the bowel, bilateral uterolysis and removed my appendix as that apparently had endometriosis on it. They did not need to remove my Fallopian tubes. I had to remain in hospital for 5 days but the care I had was excellent. The first 48 hours I felt unwell following the anaesthetic but in terms of pain it is less than before the surgery and I feel better in myself than I did a week after the diagnostic laparoscopy. Obviously I have to wait to see the long terms benefits yet, but would definitely recommend the surgery. I was petrified before but as I said the aftercare was amazing so hope you would have the same experience. Hope this helps. If you have any more questions concerning surgery etc I'll be happy to help.

    X

  • Thank you, thank you for sharing this. You have definitely given me hope now 😀 X

  • You're welcome. sorry I forgot to add in that I didn't need a colostomy bag, that too was my biggest concern. My surgeon did say that they only need to do that in very small number of cases. I would ask your consultant about this when you see them.

  • What is endometriosis what are its symptoms?

  • I just wanted to say thank you, I have never posted anything on a forum before. It was great to get such a response, and I am extremely grateful X

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