Differing diagnosis

Hi everyone,

I just wondered if anyone has had the same as me and been told different diagnosis. I have seen several different gynae consultants and have had 3 laparoscopies completed. I was told initially I had endometriosis and was started on hormone tablets and injections for this. The pain continued to get worse, I had another lap and was told then I didn't have endo but had pelvic congestion syndrome and there was nothing they could do and was discharged. I saw my gp and asked to be referred to a different consultant which she did and she was very good, she doesn't d another lap and a cystoscopy, she told me I had pelvic congestion syndrome and possible andenomyosis and gave me the mirena coil and prescribed amitryptyline. Again I was discharged asninwas told there was nothing more that could be done. I am still in so much pain and am so exhausted all the time, I have two children, my marriage ended 7 years ago, my ex husband had an affair , he was never supportive of my conditions. I have a new partner who I live with but my conditions are getting me so down, I also suffer from migraines and am so tearful all the time. I wonder if I do still have endo as well and if anyone else has had similar and feels like they have been fobbed off?

tHanks for listening

14 Replies

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  • Hi, sorry to hear about your suffering, I think you need to be seen at a BSGE endo specialist centre, deep endo and endo in certain areas often gets missed my general gyne,

    I had Adenomyosis and had a hysterectomy for thus in July, it's helped me, but I also have endo, I wasn't seen in a BSGE centre and now feel like I've had endo missed, I'm now under a specialist and am having a MRI scan on sat, then due to see him again 26feb,

    Adeno is, curable my hysterectomy but endo isn't but can be helped enormously by a good specialist surgeon, they have had extra excision training and this is the gold standard, treatment.

    Have a look for a BSGE centre in your area and get referred Asaph

    Good luck

    Xxx

  • Thanks for your reply, are you in the uk? Xx

  • Yes, U.K. Are you?

  • Yes I'm in Somerset, have never heard of the clinic you mentioned. I just feel like I have been fobbed off but am fed up of being in constant pain and feeling constantly exhausted xx

  • Yer I know the feeling hunny, I hadn't heard either, I did know about it before my hysterectomy though, and I'm jutted I didn't listen to my instinct, just wanted it other with I suppose, but if I had been referred to a BSGE centre, I could be in a different situation now, and out of pain, it's outrougous that genral gyne are dealing with ladies with endo, or are missing it altogether, there is a BSGE list on line, find the closet one to you, look up a lady on here called Lindle, read her posts, she is very informative and a great help if you struggle to get referred,

    X

  • Thanks Hun, I've just looked online, there is a specialist centre in Bristol which is about an hour from me. How old are you if you don't mind me asking? I'm 36 and have thought about a hysterectomy but feel I'm very young to make that decision! X

  • I'm 40 and had hysterectomy last year, have you got children, I've got 3 sons, my periods where so painfull, my youngest son was 9bl 12 and I felt like I was given birth again every month, well every 3 weeks, I'm still in pain, but I don't get that intense pain every 3 weeks, 50% of my everyday pain was adeno, my pain still escalates out of control, but I'm please I had it done, and don't regret it, I'm now hoping the MRI will show something up. And the specialist will excise it at I'll be out of pain. THATS THE PLAN IN MY HEAD LOL

    xxx

  • Yes i have got two kids age 8 and 13, my new partner doesn't haven't kids at at the moment says he is happy with not having any! What was the pain like from your adeno? Xx

  • Very similar to endo, I had labour like contractions for 2-3 days when on, and then pain in groin, hips back, lower abdomen, down legs, all same as now, but less,

    I would suggest you get a clearer diagnosis first by a specialist, adeno is difficult to diagnose, but my surgeon told me he was sure after he did a lap and excised some endo at the same time

    When you was diagnosed with endo, did they excise/remove any, and where was it found??

    X

  • When I had my last lap, the consultant said there was suspected Adeno as I had a bulky uterus. The endo was initially found on my ovary. I get the pain on my right lower pelvis, goes down my legs and hips. I also have the pelvic congestion too xx

  • Yes that what was said to me bulky and over sized and rectroverted/tilted,

    I recovered well after hysterectomy, but like I said, if your pain us caused by endo, it might not help unless you have full excision, defo go back to GP and get BSGE referral

  • Thanks so much for your advice. My gp is really good but will be interesting to see if she knows about bsge referrals or tries to refer me back to local hospital again. I've had 3 laps now xx

  • What you need to do is look up your local endo centre but if I were you I'd also look at the consultants reviews who work there so you can go to your gp armed and ready.

    In my instances my gp first refused to refer me until I found out they are not allowed to refuse if you request you can see by whomever you choose so don't be fobbed off.

    Also I was diagnosed by a regular gyni on my 1st lap and was told I had minimal disease but month after month my pain increased so I did my homework and found my nearest treatment centre to whom I was finally referred and the consultant there was amazing what a difference....

    When I woke up from the op he explained that on first look it looked ok it was only when he started to move my insides that he found deep disease 3 nodules and endo in my bladder ureters a small patch on my pouch of Douglas what an amazing human being he is so don't give up keep fighting like the true warrior that you are. Xx

    Hugs Sharon. Xx

  • Thanks for your reply it's greatly appreciated. I'll look into it x

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