Have been in agony for years of endometriosis

Hi everyone, hope you guys alright and not too much in pain like I'm now. This my first post. I'm 40 years old and I have one daughter nearly 8 years old.

I have endometriosis and adenomyosis diagnosed 7 years ago after always been suffering period pain for 20 years. They are stuck in my womb. I had fibroids too before I had my daughter but apparantely it has gone.

I had my first laparoscopy 2010 ( this is when they have found endometriosis)

Embolisation (laser surgery) 2012

Myomectomy 2014 and

Two weeks and a bit ago I had my second laparoscopy and also Mirena insertion that I paid myself privately. I have fed up with my old gynae at NHS. Anyway, I have been to see my consultant yesterday and he said he's done as much as he could. He took lots of endo and adhesions. But he also found severe endo on my rectum 🙈. So he could not do anything about it as it will be big op and need specialist bowel surgeon to fix it. I feel so unlucky with this chronic disease!!! Now I understand why all the time I got bloated, nausea, winds, constipation, pains down my legs, shooting sharp pains from my bum and sometimes diarrhoea, you name it everything that related to the bum area (sorry tmi).

The mirena is put in, so the idea is I will have no period! But lastnight my period started and OMG it's more painful then before!! I could not believe it. I feel so drained as had codeine, ibuprofen ect but it didn't help!!

I just want to know if any one of you have the same thing as me and how are you going to do about it.

Should I wait until Mirena Coil works or should I have a look of possible bowel operation 🤦🏻‍♀️😫??

Sorry if it is long story.

Ratih

6 Replies

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  • If you have endometriosis involves the bowel. You need to see a BSGE credit gynaecologist and a bowel surgeon for proper operation. You should be able to get a referral through NHS. You can go privately just make sure the right surgeon is doing it.

    All the best.

  • Thanks for your suggestion Stella. I will look for a BSGE credit gynaecologist and a bowel surgeon. Definitely need to be someone who knows what they are doing 👍🏼.

  • Big hugs you I'm in a similar position (my bowel endo is just a bit higher up) and have tried most things. I had the coil for a year but it only really helped for about 6 months then my pains started to return. I went to my specialist to demand full surgery but I found out he had left & I was given a non endo specialist!! I've ended up having Zoladex which is putting me into menopause. I'm praying the side effects will be worth it and shut my endo off until they get a new specialist in!

    I hope the coil works for you, this site is fantastic for moral support. We're all in the same situation and deal with daily pain of many sorts.

  • Hi there thank you so much for your reply, like you said I'm so happy too I'm on this site knowing that there are woman out there that listening and in the same situation so you don't feel alone.

    I will for the mirena coil to work, my gynae said it can take 6 months to a year for it to settled. But if take more than that then I will have to look for another surgery ☹️☹️.

    Oo so did the mirena only work for a short period for you? How long have you had Zoladek for? And are you not having pain from it? Sorry too many questions 😆

    X

  • The Mireya coil did stop my periods but I still had a do pain, bowel issues and then developed horrid nausea with it. I've only had 1 Zoladex so far due next one next week. I've had some interesting symptoms. The first week bleeding, Aldo pain & dizziness. I've been on & off since then with headaches, nausea, lumbar pain & sporadic bleeding. I've read the advice and guess it's my ovaries turning off. My gp has advised I stick with it as month 2 gets easier! I must admit I worry about it a lot but I'm out of options at the mo. I have my beautiful girl to keep me going and my husband is understanding at the mo.

    Let's hope the mirena gives you some relief. Sadly I'm realising there's no miracle cure and I'm trying to find the treatment with symptoms I can live with. I'm hoping this treatment with give me a taster of what a full hysterectomy will be like. I've been told if I still have pain after 6 months on zoladex then a hysterectomy will probably not resolve my pain!

  • Aaaah I really hope Zoladek is the one for you and you don't have to go through other op. So does my coil. My gynae said it can takes 6 mo to a year so I'll be patience. Sometimes I'm thinking negative and giving up that I will always be in pain until I menopause or whenever it will be. But if I look at my daughter, I'm on my positive mind. So like you, my daughter and husband support me and help too.

    Fingers crossed for both of us and all the woman out there that are fighting endo!! Thanks for sharing xx

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