Frustrated again what happens now?

So frustrated what happens now?? Had hysterectomy last october, when they found endo, adeno and fibroids, but didnt do anything to the endo. I have not had any treatment for endo, my gyne was clueless. Had problems since the op, same pain I had before and very achy legs . Also the usual IBS symptoms and so so tired all the time. I finally had enough and went to see Gp this morning. Just said it was probably IBS, I was given fibrogel and have to have blood test tomorrow. She couldnt understand why I was tired and why my legs ache constantly and is hoping the bloods show up something. I am so fed up and dont really know what to do, why is it always such a battle when it comes to endo? Went through enormous problems with Gp to try and get to see a gyne. Any advice on what I can do please, its really getting me down.

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  • Firstly I'm sorry to hear you are still having problems with endo symptoms despite your operation. What type of hysterectomy did you have-was it partial or total?

    If your gynae removed your ovaries did he/she prescribe HRT to help with the symptoms of the menopause? I ask as it is not uncommon to still suffer endo symptoms after a hysterectomy. I should know as it happened to me.

    After having a hysterctomy in 2011 I told myself I was fit and well as I had nothing left to keep giving me endo symptoms <no ovaries, no womb, no tubes etc>. However in 2012 I saw a new GP who referred me to a new hospital as I had moved a long way from my old one.

    As I was seeing a gynae with no knowledge of my recent endo history one of the options he gave me was to have a lap and see what was going on inside. Although I didnt particulalry want more surgery I felt it was the only way of finding any answers. The result was I had endometriosis on one side and ovarian remnant tissue on the other. In some ways I was relieved to hear this because it meant there was a real reason for my pain.

    In order to cope with the pain and discomfort I am having Prostap injections every 4 weeks. Yes, this is something I didnt think I would have to worry about post-hysterectomyand one of the reasons why I hadnt taken HRT as the oestrogen within it can feed endo.But the regrowth of endo still happened to me.

    It saddens me that you have had a battle to get taken seriously. If the bloods do not show any reason for your pain can you ask to be re-referred to a gynae for further investigations?

    Good luck

    Caroline, x

  • Hi caroline

    Thanks for taking the time to reply. I had a total abdominal hysterectomy and retained ovaries. I have not been on any hrt at all. When I had the operation they found endo adenomyosis and fibroids. I initially had op due to continous bleeding and pain despite trying several different hormones and tablets.

    I am sure that the endo was left, I did ask gp what the pathology report said but it was not a full report. Before my op I had to be forceful and demand to see a specialist as all she wanted to do was give me the mirena and painkillers.

    I have blood test results tomorrow so will see what that brings first. If I don't get anywhere I really think I will have to go back to GP and find a different specialist. Its just so frustrating with the doctors. Previous to the last few years I hardly ever went to the doctors, it makes you feel like a hypercodriac.

    Thanks for your advice

    Julie xx

  • Removing the uterus will have removed the adeno, (that's the good news) but keeping the ovaries means that they are still feeding the remaining endo patches elsewhere with oestrogen.

    Unless you have a proper endo surgeon cutting out (excising) as many of the endo lesions they can get at, that endo will still be active because it is still getting oestrogen in bulk from the ovaries. Even if your ovaries had been removed, by havng HRT you are adding back oestrogen. The rest of your body aside from the ovaries also produces oestrogen too, so there is little means of escaping it, but there are ways to cut it down.

    Either through GnRH drugs which shut down the ovary production (and other bits of you too) or by having them removed (not ideal for long term health), or losing weight (the tubbier you are the more your body produces oestrogen elsewhere), or cutting out the foods which encourage oestrogen production (the endo diet addresses these foods).

    Ultimately decent targetted surgery is the very best way to help reduce pain.Each surgery does encourage adhesions to grow and these can also be a source of causing pain when they stick organs together, or form around vagina or bowel or intestines contricting them like a glue sheath, but they can take a long time to regrow after surgery to cut them back. You will already have adhesions from past surgeries as well as from endo patches.

    Post hysterectomy pains are not unusual, there was an article in the DM recently

    dailymail.co.uk/health/arti... (be sure to read the comments section underneath too)

    I would suggest your next step should be to try and get referred to one of the accredited endo centres in the UK with a view to seeing one of the specialist endo surgeons who hopefully can dig in and get those remaining lesions cut out once and for all.

    This website has a list of the approved/accredited endo centres

    bsge.org.uk/ec-BSGE-accredi...

    I know it means yet another surgery, but hopefully having an expert on the case will reduce your suffering afterwards by a considerable amount.

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