Diagnosed with endo but gynae says its NOT causing my chronic pain. Help!

Hi, after 3 laps, removal of a twisted dermoid cyst and ovary, adhesiolysis and endo laser removal my gynae says that my chronic pain is NOT endo related. I feel like I am going round in circles!!

I have chronic right sided pelvic pain (cyst and ovary removed from right side) and right thigh and hip pain. Gynae says I have a few patches on endo but thinks that the pain isn't being caused by this as have had prostap injections and the pain was still there.

Am now being passed onto the pain clinic as he says he cant do anymore.

My question is should I go to see an endo specialist privately or just accept that endo isnt causing my pain and I am stuck with it?

Anyone else in the same position?

Thanks.

18 Replies

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  • hi,

    Thigh and hip pain are symptomatic of endo.

    I would recommand to see urgently an endo specialist privately.

    Some Gynae have just no clue what kind of sickness endo is. (In my case, I have seen 4 gynaes who had no clue, i knew more about the subject than they did. I saw a Professor (endo specialist in Paris) and finally could have somebody to trust.

    lola (paris)

  • Thanks for the reply, glad you found the help you needed.

  • Hey

    Please, please please go and see a second great endo gynae before they start poison you with addictive pain tablets etc.

    I know exactly what you feel, I had the low right pelvic pain(and hip pain etc) before lap and after finding only superficial endo i was left with the same severe pain post-op. My doctor even said that it was all in my head and pscycological etc etc.

    Thank God I went to a really great endo doctor for second opinion and I was instantly diagnosed with deep severe infiltrating endo in my right uterosacral ligament. This means that even the tiny bit of endo when it is stuck in places like ligaments that they are full of nerves they can cause too much pain no matter if you have your period etc.

    I was lost and depressed but I feel relieved that I know now what it is and whenever I am going to decide my next lap everything will be better.

    I dont get it with some doctors how they make conclusions if one medication is not working for you then you dont have endo. This is the reason there are so many drugs cause we are all different.

    Jo xx

  • Thanks for the reply. Its a nightmare! The gynae is not disputing that I have endo, he did find some and lasered it, he just doesn't think it is causing my chronic pain. He thinks it may be neuropathic pain as it didnt go when I had the prostap injections. Think I will go to see the specialist. Thanks for the reassurance that I am not being unreasonable, its appreciated.

  • Just to add that agree with Lola, there are so many gynae that they even treat endo but as soon as the endo is not in the usual, typical places they are stuck.

    Thats why you need to find a top endo doctor.

    Wishing you luck

    Jo x

  • Thanks for the reply

  • Hi,

    I'm in the same position as you. In my last lap they told me they didn't find any endo but did find lots of scarring and a sticky ovary. I then got told it was in my head and I had IBS. Neither of which is true. Seen a really good GP today who made me laugh. I told him I thought they'd missed something in my lap and his reply was a big grin and said "well you'll have to discuss it with the hospital in your appointment in October. Put it this way, you are on medication we prescribe for endo and it's working!".

    I would defo push for a second opinion x

  • Thanks for the reply.

  • hi there

    how amazingly frustrating for you.you say he said there is nothing more he can do is he discharging you even with an endo diagnosis?If you anything like me my pain evolves in places out of the blue and yes it does appear in my groin,hip left side and right side.i hope you get some answers from some where Bxx

  • Hi, he hasn't discharged me yet, I have a follow up in 6 months. After the prostap injections my periods didn't come back so he is waiting to see what happens when they do return (which they did at the weekend, finally). He thinks I have neuropathic pain and not endo pain hence referral to pain clinic.

    I think I will go to see the specialist as there is a good one close to where I live. My gynae has also offered to refer me to the specialist on the NHS but basically said he thought it was pointless as in his opinion it is not endo pain.

    I do really trust my current gynae and he has done some very tricky surgery on me very successfully but he doesn't specialise in this area.

    Thanks for the reply, I appreciate the support x

  • Yes rings a bell, have similar right pelvic hip pain radiating down to knee at its intensity. I would describe it as pinching deep in my pelvis as if ovary (but I am menopausal) is stuck to pelvic wall, still don't know so frustrating. I would definitely search for an endo adhesion specialist gyne not just an ordinary gyne in your area or/and an endometriosis centre even if you have to travel!

  • As others have said hip/leg/thigh/groin/buttock pain are all endo symptoms.

    Some doctors really do not have a clue. You only need a TINY amount of endo to cause immense pain. It is a weird disease - some people can be riddled with endo and have no pain at all, someone else can have one pin prick size and be in agony every day of the year.

    The hormone treatments DO NOT work for everyone.

    I had my first lap after much battling and being told I was too young for endo. Anyway they found it and lazered it. I was immediately put onto Zoladex (similar to Prostap). The pain continued. I had a repeat lap 11 months after the first and the endo had spread and regrown but I had been on Zoladex since my first op - so it proves that those treatments do not work for everyone.

    Is the gynae you see a specialist or just a general gynae doctor?

    I would say, still go to the pain clinic - I went to them just because of the amount of pain I was in and they were excellent advising different medications and things I could do to help. But I would definately get seen by an endo specialist.

    If you find an NHS specialist you could just ask for a referral to them, rather than having to pay privately xx

  • I too suffer from pain from my right pelvic/hip/back/etc area, which radiates all the way down to my leg and also i feel it is travelling all the way up to my neck, in effect my right side feels completely 'jammed up'. I am having a really bad flare up at the moment. It has taken years for me to be diagnosed (lap march 2011) after being told it's 'all in my head', stress, IBS, etc, etc.....

    My advice is don't give up, after all you know your body better than anyone so don't be fobbed off!!!! All my pestering finally got me referred to a gynae, after being referred to a gastroentrologist for IBS (it was the gastro that eventually referred me to the gynae, but I had to ask!!) and now, finally I am waiting to be referred to an endo specialist in Manchester (again, I had to ask and even give the consultant the details?!?!?!!) which was recommended to me by an endo support group i have recently joined.

    There are odd days where i have a glimmer of hope of what its like to feel normal, but they are very few and far between. I love them days!! I have tried all manner of things, various painkillers (without much effect) back to back pill (made pain worse, weight gain, emotional wreck!!), CBT (its NOT all in my head!?), physio for said pain (complete waste of time), an osteopath (private, again for said pain, i did feel this helped a bit but more for the postural effects than the endo) and I am considering acupuncture as some one told me they had very good results with this and have been pain free for over 2yrs :)

    I prefer to treat things as naturally and holistically as possible and try to keep a high anti-inflammatory diet to avoid painkillers. Shutting my ovaries down (as they are trying to persuade me to do) scares the hell out of me! As do all the symptoms that come with it! And at 35 my greatest worry is whether i will ever be to have a baby (I also have PCOS)

    Sorry if I've rambled on a bit here, but i'm new on here and i got a bit carried away?!!

    Wishing you all pain free and happiness xxx

  • gosh i am similar to all you ladies had last lap in april they found tiny endo nodules between kidney and bladder in ureter so were unable to laser it because such a delicate area . had 3rd prostap injection 2 weeks ago still no relief pain seems to be worsening have also been told if injections dont work it is something else causing pain . my pain is mainly right hip/ groin area and lower back however sometimes i do have left sided pain and mid back pain. gp started me on bupronorphine patches this week which seem to make my regular painkillers last longer ie co codamol and naproxen .ps im 44

  • I have suspected Endo but they are trying Zoladex, my 3rd injection in a week it has given a little relief pain scale 3/4 today rather than 6/7. My pain at minute is worse when sitting. I too have been told if Zoladex doesn't work it's not Gynae related. I am very confused as what I have been reading this doesn't sound right as Zoladex doesn't work for everyone. Please Advice Needed

  • Hi, adenomyosis is often left undiagnosed in women that have endo. It is worth considering being screened for the condition since it causes unbearable pain as it progresses. adenomyosisadviceassociatio... Please feel free to take a look at the symptoms page - which I hope will be of some help to you x Danielle x

  • Hi Danielle - you mention being screened. I thought the only way to diagnoise was after a hysterectomy. Is there another screening method available?

  • Yes, you can be screened via MRI. If you take a look at this link - it shows you what adeno looks like ultrasound-videos.blogspot.... to the radiographer. It is actually very clear. The red to white coloured areas are hot spots that are constantly bleeding. These are the adeno areas. Speak to the radiographer and tell them that you have seen what it looks like and that you are eager to be screened.

    Hysterectomy traditionally was and still is for some clinicians the only way that they 'want' to believe the condition exists - but if you bear in mind they also screen for cancer after they have taken the uterus out, it's not that great an option in my mind!

    Hope that helps a little. You can always reach me via the AAA website

    Take care x Danielle x

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