Endo op

Hi I had laparoscopy on Thursday for removal of dermoid cyst on remaining half of an ovary but when I woke up I was told my uterus was fused to my bowel with extensive endo I was diagnosed three years ago during a laparotomy for dermoid cyst but was only a little but now obviously I have a lot I'm so worried about the next op to have uterus split from my bowel and remove endo has anyone else had this ?

Lisa xxx

19 Replies

  • Hi Lisa, I had my lap done just last tues. Got the same diagnosis, as well as endo in other places. I have an appointment on the 20th August to discuss the options for treatment. I soon as I know I will update you. X

  • Hiya oh great that would be fab I have my follow up in six weeks when he said he would look into treatment options with me and refer me to north staffs specialist centre would be great to know how you get on

  • Hi Lisa,

    This time last year I was recovering having had my bowel released from my uterus and my left Fallopian tube removed. I won't lie it's quite extensive surgery. I was under for 4 hrs and had 3 consultants operating on me (gynae, urology and gastro). They managed to do it all through lap and luckily without having to revert to colostomy (but apparently I did come close). I didn't have all my Endo removed though as the consultant wanted to do the bear minimum in order to help me through the IVF process. I was told I would need at least 8 weeks off work but I was back after 5 and could of gone back earlier to be honest.

    I'm waiting to see gynae again as I think my bowel may be stuck again

  • Lisa I've just noticed you put about north staffs.....are you from Staffordshire?

  • Hi nat

    Thanks for your reply :)

    I'm in crewe but they are referring me to north staffs as they have specialist there I think they may remove my uterus as I have a 15 year old boy but don't plan on any more I'm 35

  • I live in newcastle so north staffs is my local hospital (and my place of work lol). Endo consultant is fab. He's just operated on one of my work friends too. You'll definitely be in good hands

  • Ahhh fantastic :) that's made me feel so much better :) I'm trying to apply for north staffs hospital myself gwen an oppurtunity comes up within the pharmacy department x

    I think this page is fab for sharing experiences and worries that we have being endo sufferers is it ok if I keep in touch ? Comforting knowing someone who understands how I feel :)

  • Of course Lisa. Feel free to message me anytime

  • Did you feel better after the op nat after recovery of course ? X

  • I had some relief but I didn't have all my Endo removed as he was afraid if he did I may not be able to have IVF. Also I wasn't put on any meds/treatment afterwards to keep it at bay as he didn't want to effect the IVF treatment. But I have since found out that I could of had the pill in between times and since my IVF treatment failed I have been on Yasmin which has helped with the Endo no end.....but have major migraines with it! So come off it again.

    So starting IVF again soon and then hopefully will get on top of my Endo again.

  • Ahhh I'm wondering if they will do that with me I think they may remove my uterus tho and do total hysterectomy as I only have half an ovary on each side and one has a dermoid cyst on it x I'm worried about the op with it being stuck to my bowel they are going to discuss treatment in 6 weeks but he briefly mentioned mirena coil but I'm not keen x can't wait to be transferred to north staffs now hiw long dud you wait for your surgery ? X

    Hope all goes well with ivf for you :) xxxxxxx

  • Thanks Lisa. Originally I was seen in october then had my 1st lap in the january. Then went to see IVF clinic in the April who advised more surgery so saw consultant again then had my big op in June. Then went on to start IVF in November (Busy old year lol) .

    Try not to worry about the op. I know it's easier said than done. But if you have the same consultant as me he tends to get a team of surgeons (gynae, urology and colorectal) to cover all basis. He did this with me and my friend and neither of us had any complications.

  • That's brilliant it's so good to be in touch with someone who's going through the same :) wish the 6 weeks would hurry up so I can get things moving I will let you know who I'm referred to too xxx

  • It's such a slow process isn't it. You feel like your life is on hold and you are consently playing the waiting game. And just as you feel like you're getting somewhere something else happens!

    Honestly feel free to message me anytime. Sometimes you just need to rant at someone who knows how you feel. Family and friends as lovely as they are soon get fed up of hearing about it

  • True,I am in so much pain,my family gets irrated with me,after wIting for months got my lap date but was cancelled due to high blood pressure.

  • Yes I agree they try their best but don't fully understand the frustration I found the extensive endo last week and just kept crying my hubby kept saying what's wrong ? I explained about another op and all that comes with it I don't think men understand how it works it the debilitating feeling it gives us either :(

  • I am also really interested in knowing your experiance with this.

    I had my lap op in january to emty some cysts, never had one since I was diagnosed with Endo. When I woke up they just sad 'it is very impressive that you have managed to last this long'. My uterus is completely stuck to my bowels, my ovaries are stuck too. the scar tissue has also partly gone through the bowel wall and there were scar tissue everywhere in my abdomin. Since my surgery I have been on the GnRH injections.

    Due to the uterus is stuck to my bowels it also causes complications for my IVF. they cant do the egg retrievel trans-vaginally, they have to do another lap op otherwise they will perforate the bowels. I also have hugh issues moving my bowels with extreme pain. I often end up screaming and crying due to the pain. Last time I almost passed out and was shacking violently. I also have pain from the other scar tissue and endo cysts that has grown again, despite being on the GnRH injections which is suppose to ease my pain.

    The gastro surgeon recommended a bowel resection as an option to ease my pain, but I have to choose what is more important right now, the resection or IVF, I chose the IVF and I am suppose to start my IVF treatment as soon as my cycle has started again. Thought that I might as well do the bowel resection when they do the hysterectomy. But this last week, the pain has been so bad that I have started to question my decision. Know my husband and my parents want me to have the surgery even thou they haven't said anything.

    I have already had the MRI and seen the gasto suregon once, but I am seeing him again next week. Gonna go over my options again, but last time he said that they will probably need to remove a part of my bowel in order to separate it from my uterus and there is a risk that I get a bag. But due to the pain I am having, he is recommending that I have the surgery.

    been on tramadol and co-codramadol daily for the last 6 months and pain management at A&E when needed.

  • Aww Sandra that sounds awful I feel for ladies that are going through ivf aswell as having to deal with endo :( it's such a difficult thing I was having bad backache and terrible thigh ache too I don't have heavy bleeding and periods are regular ( until lap messed me up last week ) I knew something was a miss but was still shocked when they told me my bowel was fused to my uterus as I have a son who's 15 I'm wanting them to remove uterus and maybe ovaries aswell as one has dermoid cyst on and I have blocked Fallopian tube so I can't see any point of me keeping any of it as I fear the uterus will just stick again after I just hate the waiting game in between :( I will keep you updated great to make friends with people who understand :)

  • Oh btw Sandra did your consultant say the colostomy would be temporary ? Xxx

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