Nerve damage

My daughter(29) has suffered chronic abdominal pain for the past 3 years,she has had 2 x laps done by gynaecologists and although it was once suspected,has been told that she does not have endometriosis.During this time she has had the Mirena coil fitted,Zoladex injections and is now on Norethisterone tablets but none of these have stopped her bleeding.The "specialists" are now trying to tell us that it is Visceral Hyperalgesia(nerve damage),I am still not convinced due to the fact that a diagnosis needs to be done by an Endo specialist, that my daughter does not have Endometreosis.Has anyone else gone through anything like this or can anyone give me any advice.

17 Replies

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  • Amy (my Fiancee) has just had an MRI and it has revealed some tutors on the inside of her womb which the specialists now suspect might be a reason behind her heavy bleeds. Maybe a route to pursue? The only negative of this is that it doesn't show endometriosis very well so we still have no idea if her Endo has returned.

  • Please have a look at fibroids and Adenomyosis to see either of these might fit.

    Best wishes x

  • If she has had a laparoscopy, this is the only way they can 100% diagnose endo. My original laparoscopy was done by a consultant gynae, not an endo specialist and it was immediately apparent I had severe Endo. I was then referred to various gynaes and now a national specialist in endo. I would trust their judgement as once they find it (in my case anyway!) They will do all they can to help you.

  • Hi worrieddad,

    It sounds to me as though the "specialists" are trying to fob you off. Visceral Hyperalgesia is not a condition in its own right but a symptom of some other underlying disease or condition. It occurs when there is damage or injury to internal organs. This diagnosis also does not explain her continued bleeding. Perhaps I'm being cynical but saying someone has Visceral Hyperalgesia is a bit like saying "you have something called pain".

    Do you know if she was seen by a general gynae or an endo specialist? Endo is so complex that it has a specialism of its own and you often find that many general gynaes have very poor experience of endo. It can be microscopic and difficult to spot but generate severe pain. It sounds as though a second opinion is in order with either an endo specialist or a good gynae you have researched. There is a list of endo centres here bsge.org.uk/ec-BSGE-accredi... but I have noticed that some endo specialists have recently disappeared from the list. It could be that they did not conduct the minimum number of endo operations in the past year in order to be on this list. There are various qualifying criteria.

    Get a referral from your GP if you can. Getting second opinions can sometimes be tricky but if you do your research and present your case well then it will make it more difficult to refuse. If that proves too difficult you could pay to visit one of the endo specialists privately until you get the ball rolling and switch back to seeing them on the nhs. The important thing is that your daughter gets a clearer diagnosis than the one she has been given. In my view it's not a diagnosis at all. They have to give a reason for the pain. Another poster mentioned adenomyosis and fibroids which are worth chasing up. Adenomyosis or fibroids embedded in the uterine wall are not visible during an op but there is a possibility they might show up on an MRI.

    I hope you find better help for your daughter.

  • Many thanks for taking the time to reply.My feeling is exactly the same as yours,my daughter has been fobbed off throughout the past 3 years and is now on alarmingly strong addictive painkillers(Methadone & Ketamine being 2 of them).On one of her laps in 2013 the "specialist" quotes that he divided some adhesions between the pelvic wall and the sigmoid colon and had drained a simple cyst on one of her ovaries.As there was no improvement in her condition I did decide to take her to see one of the approved specialists from the centre which you mentioned(privately).We live in Perth and this specialist was in Edinburgh(50miles away),and despite him not recommending a Laparoscopy(which I thought was the only way to prove or disprove endometriosis),he told us that he did not think that she had endo.Call me cynical but I wondered whether he maybe knew the original "specialist" and did not want to "step on anyone's toes".I really do not know what to do now as she is still in almost constant pain,has lost her job and cannot look after her 2 little boys.Again many thanks for your reply and sorry to bother you but it helps having someone to discuss this with

  • Dividing adhesions isn't going to achieve much. My understanding is that they need to be cut out. Draining a cyst is a bit pointless too. They can refill. What were the results of histology? Was any tissue removed for testing? Good endo surgeons get the tissue tested for endo to confirm what they have seen visually. It was probably tested for malignancy but was it tested for endo?

    I'm not a doctor but...I don't think your daughter is suffering from a deficiency of methadone or ketamine! That sounds like wallpapering over the issue to me. Dealing with a symptom only is never going to resolve an issue but it is sadly very common practice.

    Your next option is to go further afield. I think there is a new team in place in Aberdeen but I don't know anything about them. Travelling to Edinburgh from Perth is not really that far in comparison to the distances travelled by some women on this forum to gain access to a good doctor they are happy with. I know that might mean spending money but it is worth considering.

    In the meantime there are things that your daughter could do to try to alleviate some of her symptoms. There is no guarantee that this will work but many women start to see good results with a bit of perseverance and a lot of patience. If you search 'endo diet' on this board plenty will come up and also on google. There are differing points of view on how effective this can be but make up your own mind. Bear in mind that your daughter might not have endo. Either way, eating a good diet with tonnes of veg and fruit will help. Try to eat organic if you can afford it. The 'endo diet' recommends eliminating meat but I don't fully agree with this. Each to their own. It's a case of finding your own way.

    There are several books on endo. My favourite is From Pain to Peace with Endo by Aubree Deimler. She also has a great website peacewithendo.com

    When it comes to food and recipes Ella Woodward's site is really good deliciouslyella.com She doesn't have endo but had a very serious condition that she healed by changing her diet. It took 18 months to start to see results. Her site will make you realise that eating really well for health does not have to be restrictive or boring.

    Meditation and/or Mindfulness and yoga will help too. endoyoga.com All have been proven to help reduce pain.

  • hi worried dad

    it's been 10 months since you have posted .i ve similar symptoms as your daughter severe pelvic pain everyday but normal bleeding . i had a d-lap done but told no endo found .could you pls tell me whom you are consulting now and did they diagnose it as adenomyosis

  • Hi Pinkypop,thanks for your post.

    After insisting on my daughter seeing an endo specialist,at last she was referred to a specialist in Edinburgh.She had her first appointment at the beginning of November and we were absolutely delighted with the meeting.She was seen by a pain specialist,an anaesthetist,a gynaecologist as well as the Endo specialist and for the first time in 4 years,we felt as though someone really cared.She has had another MRI scan to see if it could be Adenomyosis and is waiting on a date for another Laparoscopy as the feeling from her consultation is that it is probably Endometreosis.

  • dear worrieddad

    thanks for your reply .Did the specialist say she has endometriosis -which is microscopic in natute not visible in diagnostic lap?I HAD A MRI-WHICH WAS NEGATIVE FOR ADENOMYOSIS -

  • Pinkypop,we have not had the results of the MRI and are still waiting on a date for her Lap,endo still has not been confirmed

  • Hi there,

    I've had exactly the same treatment as your daughter and I still had bleeding. I mentioned it to my gynecologist and he said that there's a possibility that the wire on the coil are rubbing and causing the bleeding as there should be no bleeding at all whilst having Zoladex and the coil. He said it definitely wouldn't have been a period as such

  • Hi abbiclaire,my daughters main concern throughout her illness has been the almost constant severe pain which has caused her to lose her job and is unable to look after her two youngboys

  • hi worrieddad

    i'm in touch with Dr Trehan at dewsbury-spire elland . i read from your previous posts that you were interested in consulting him . Did you consult him for your daughter ?I WOULD LIKE TO KNOW HIS OPINION , BECAUSE HE TOLD ME I MIGHT BE HAVING EARLY STAGE ENDO EVEN IF MY LAP IS NEGATIVE ,-BIOPSY IS THE ONLY WAY TO CONFIRM IT .I LIVE IN SEVERE PAIN EVERYDAY . AWAITING YOUR REPLY WARM REGARDS

  • Hi Pinkypop,I only enquired through Dr Trehan's secretary for quotes for consultation,diagnosis and any other surgery.Because of the Geography,we decided to push to be seen by an endo expert in Edinburgh who was recommended to us and although it is early doors,I was really impressed after our first meeting.The other thing that concerned me with travelling down south was the thought of any complications after surgery as well as the extremely high costs.Don't get me wrong,if I was told that if I spent this amount of money,it would cure my daughter,I would not hesitate. Regards

  • Dear worrieddad

    Thanks a lot for your quick reply . You are absolutely right . Dr T does a procedure called TPE -have you heard of any complications after surgery ?Please let me know your opinion on this .I do'nt know anyone other than Dr Trehan as he is the one who is willing to operate on patients with negative lap for endo and HE IS expensive too .I do'nt know which endo specialist you are currently consulting . Can you pls share some details of the surgeon .YOUR CURRENT SPECIALIST , DID HE SAY ADENIMYOSIS ? , HAVE YOU RECEIVED THE MRI REPORT .?AWAITING YOUR REPLY -REGARDS PINKYPOP

  • Hi Pinkypop,I have read about TPE on Dr Trehan's website and it sounds like the solution to endo.You could maybe ask anyone on this site who has dealt with Dr Trehan to see if anyone has had any complications after surgery.The specialist that my daughter is seeing is Professor Andrew Horne in Edinburgh Royal Infirmary.We have not had the MRI report back yet and hopefully if my daughter requires another laparoscopy,it will be within the next 6 weeks.

  • DEAR WORRIEDDAD

    WISHING YOU AND YOUR DAUGHTER A HAPPY NEW YEAR .

    DID YOU GET THE MRI REPORT ?WHAT DID THE DR DECIDE ? THANKS FOR SHARING DETAILS REGARDING YOUR CURRENT ENDO SPECIALIST .PLEASE DO LET ME KNOW IF THEY HAVE DIAGNOSED ENDO EITHER BY LAP OR ON MRI. WISHING YOUR DAUGHTER A SPEEDY RECOVERY .PINKY POP

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