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Endometriosis UK
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Uterosacral ligament endo!

Hey,

Has anyone had endo excised from here?

I’ve got a 1cm nodule in my left ligament (luckily hasn’t infiltrated bowel) and adhesions in my POD.

I’m waiting for op to remove as causing me a lot of pain. Would love to hear some success stories.

Love

Katie x

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I had excision of a large rv bowel nodule and u/s ligaments. I had back pain and lack of flexibility in my lower back before the op that I had (wrongly) blamed on an old injury or disc issue for years. This symptom has improved significantly since my excision, though my post op journey has been far from pain sailing in other ways.

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Hey,

Thanks for replying. I’m so ready to have this op. I literally have pain all over my lower region and please excuse the following TMI- I cannot remember the last time I had a comfortable bowel movement!!! It’s been bloody years.......

Do you have any knowledge on adhesions and the pain they can cause? I had a lot divided in my last op but wondering if they’ll cause everlasting pain? X

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Ive just had laparoscopy to diagnose and remove endo (2 days ago). The surgeon found that I had endo on my uterosacral ligament. It's been removed so I'm hoping the pain I use to experience starts to die down. I use to suffer with awful pains down my leg whilst on my period and also sciatica. It affected my bowels as well. Ive also had the mirena coil so I'm hoping the combination if it all will make my life that bit easier! I'm also keen to hear success stories because at the moment I'm in a lot of pain post surgery and need to know it's worth it lol

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Hi Katie I had endo removed from the USL (as well as lots of other places...) 2.5 years ago. My surgery took 5.5 hours and it completely changed my life. I went from being in pain most of my cycle to being almost completely pain free! It took about 3-4 weeks to recover from the op but it was so worth it. Hope you get your date soon and all goes well, take some peppermint tea bags with you to help with the pain afterwards, as it can be quite sore when the gas is trying to escape xxxxx

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Thank you so much for your response! Can I ask what you had done during your op? I’ve got three (luckily small) recto vaginal nodules and lots of adhesions in my POD. I’m on Zoladex until my op... I’m desperate to try for a baby but that’s got to be put on hold now until I get myself sorted xx

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Of course... I can’t remember all the areas where it was but I had dense bowel adhesions, ovary was wrapped up in my bowel, uterus was stuck to the bowel on left side, some endo in POD and USL too. It had also wrapped itself around my left ureter and was constricting it, which could have caused kidney problems for me if left alone! So my amazing surgeon removed a lot of it and repaired my ureter too. A few months after having the op we went through IVF. Three embryo transfers later and I’m almost 36 weeks pregnant now 😊 xxx

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Wooohooo!!!! Congratulations that is amazing! It’s so nice to hear a positive conception story....

I must admit it’s something that plays on my mind as I had a miscarriage before it even came out about the extent of my endometriosis.....

I am worried as I’d love a baby and feeling quite down at the moment it won’t happen. It’s been such a shock thinking I just had IBS all these years. To be told I have severe endo is a hell of a lot to come to terms with....

I think I’ll be under for a while as I have 3 nodules, POD adhesions and bowel stuck to womb 😢. I imagine I’ll feel like a different person though once it’s sorted x

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Yep it certainly sounds like yours will be a little more complex than most ops, just allow yourself plenty of recovery time and plan little treats for when you are recovered 😊

I remember being very shocked finding out too, by my surgeon over a bowl of cereal after having an op to remove my left tube (tests had shown it was damaged). Nice photos of my insides whilst eating breakfast.... At that point I’d had two miscarriages, I went on to have another two (each embryo transfer we had a positive test but it came away at about 6 weeks).

I really wish I had known more about endo, I’ve learnt that a lot of the symptoms can be eased by changes to your diet by avoiding foods that cause inflammation. I had my intolerances tested to see which foods my body doesn’t like, and removed them from my diet, it made a massive difference! I used testyourintolerance website I think it was called if you wanted to look at getting yours done xxxx

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Can I ask how you kept your spirits up through diagnosis/MC’s etc? My mental health is seriously suffering and I know I’ve got depression from everything.

I know I should be grateful I’m in the hands of a specialist who will do extensive excision but even that makes me emotional thinking what I’ve got to put myself through in order to get better.

I hope these are normal feelings and emotions xx

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Hi Sprinkles86,

I saw your replies and thought I'd ask you some questions about your pains/symptoms too. I've had my second laparoscopy this year (6 months apart) 3 weeks ago. It was found that my left ovary was stuck in the left ovarian fossa and there was also an

endometrioma beneath it and endometriosis on the left pelvic side wall involving the left ureter and

uterosacral ligament. All of the peritoneum on the left pelvic side wall was excised along with the endometriosis that was found there

. Finally I also had a fibroid removed from my fallopian tube. The bowel was also slightly stuck toward the left uterosacral ligament. All this endo was removed so there was a lot done! I'm still in pain... after 3 weeks and I'm desperate to know if this is 'normal'. I'm assuming it is, but I think I'm mostly concerned of the nature of my pains... Currently I have a debilitating hip, inner thigh, groin and vaginal nerve pain; these pains are all left-sided. Did you have pains near the hip, thigh etc due to the endo pressing on USL nerves? And did you have these pains for a while even after the operation? I'm just so anxious and worried about these constant pains and I don't know what to think.

Thanks so much in advance,

Ersilia xxx

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Most of my pain is caused by the endo in my right USL but my surgeon couldn’t remove it because it is near a major blood vessel so I’m still in pain most of my cycle. I’ve just started the mini pill, hoping it helps.

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Oh goodness me, bless your heart. Did they manage to remove any other endo during the lap to give you some relief? Im about 4 weeks into Zoladex so will see how that goes.. xx

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Thank you. They didn’t remove much. Most was behind my uterus to which both ovaries have adhered. They couldn’t free my ovaries without risking my egg reserve. So my symptoms are worse now than before my lap last September, especially in that right USL.

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I had such high hopes for my initial lap that it would make me feel better but he only freed adhesions so doubt it will make much difference.

I never knew life could be this complicated!!! X

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