Endometriosis and EDS/HEDS?

Hi everyone.

I've been here before, in January this year I saw Dr Kazkaz, she said I would have been EDS3 but the criteria has changed and I don't fit the new criteria, so it's hypermobility spectrum I have been diagnosed with.

Anyway, A few weeks back I was diagnosed with endometriosis, purely coincidence, I've thought I've had it for years, but GP never took my pain seriously, a blood test for stomach issues found elevated CA125 and an ultrasound found an endo cyst on my ovary.

I was wondering if there was a crossover with having endo and EDS/HMS and whether it was due to the malfunctioning of the bodies connective tissue as well. I have read that even autism can be related.

Also, because of this, I am really scared of having an anaesthetic and being under for possible surgery. I understand we can have a bad time with it (in the dentist the local doesn't work well for me and I can still feel it) and I'm pretty petrified about that, and also the pain afterwards, it's bad enough just to go to a regular appointment, I'm left bedbound after just a sit down appointment, I just don't see how I will be able to cope afterwards.

So if anyone's been through endo and a lap I'd be really thankful to hear your experience or advice.

Thanks all.

13 Replies

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  • Hi. Not sure if I can help with the endometriosis, my pain and problems did not turn out to be that's, however I have issues with numbing at the dentist to the point it put me into the hospital as a kid, because he had to give me so many injections, that when my face eventually numbed I chewed the inside of my cheek so badly. I have now had several big operations including a laparoscopies for a uterine ventro suspension, in fact my last gynaecologist op I had a spinal, and it was ok, I do take longer to recover but I also have PKD which is a chronic kidney condition.

    The worst thing for me with general anaesthetic is my stomach acid, so I have to have a tube down, and that usually make me sick and gives me a sore throats. Tends to be local that doesn't work for me.

    Looking through my EDS book I can't see any mention of endometriosis, others might be able to help with that.

    Jan

  • Thank you for the reply.

    Online, I'm seeing quite a bit that it can be related/cross over, so I just wondered if anyone here also suffered from it.

  • I am sorry to hear about the endo, but at least they have found it now and even if there is still a lot of pain, at least you know why.

    As for links with EDS, don't forget Hickam's Dictum: Patients can have as many diseases as they damn well please!

    So there is no reason to think that they are associated, lots of people have endo but not EDS, and lots of people have EDS and no endo. It doesn't mean that if you have both they don't interact with each other, but there isn't necessarily a direct link.

    As for the anaesthetic problems, it is generally only locals that don't work, and even then, again, it isn't everyone. Locals work fine for me. In fact there was someone for whom locals weren't working, and her consultant contacted the only other person that was working on this locally, which was a specialist in EDS. But the person didn't have EDS!

    It turned out that there is a separate factor with locals not working, that has to do with the sodium channels of the nerves rather than the soft tissues.

    Another aspect is that some people feel pain more strongly than others. I can sail though procedures with no pain relief whereas others are on the floor with pain. It is just how our brains are wired up.

    I have had a lap and dye, and there was no pain at all, a bit of aching but I went right back to normal pretty quickly. However since then any internal such as a vaginal ultrasound, ends up aches for weeks afterwards. Turned out that the lap and dye resulted in some adhesions!

    I hope yours goes smoothly!

  • Thanks for the reply, I just wondered if there was a connection, as I said, it's all connective tissue and it can be involved in aspergers too.

    Glad you handled your lap well, but sorry you've had such pain afterwards.

  • Hi rose. I have not been diagnosed with endo so I'm sorry I can't offer advice specifically relating to that..But I suffered terribly with my periods throughout the years until they ceased. I also had a womb cyst which was only discovered on a pregnancy scan. It was later removed, and as with childbirth, I also again bled heavily afterwards. I did not have my hEDS diagnosis back then and could not safeguard against this as I hopefully would be able to now..Menstruation is often a problem with these conditions. Mine would exasperate my other symptoms, and I always suffered with pains in that area. Thankfully those problems have gone, but menopause has brought different ones 😱..

    My 21 year old son who has hEDS is due to have jaw surgery in January - it had to be postponed in May,in order for him to have various tests to check for mitral valve after getting hEDS diagnosis-. We saw EDS specialist Dr Hakim a few months ago.. I was very worried about my son undergoing surgery, but I felt reassured after speaking with the Consultant and learning that there are certain measures that can be done and procedures to follow which should prevent any problems. Dr Hakim wrote to the surgical team, and nearer the time of his op we will again ensure all this is going to be adhered to.. We also insisted on meeting the lead anaesthetist. My son previously had a bad reaction from an anaesthetic. This may have been due to the early onset of ME which was unbeknown to anyone at that specific time. But because of this, we insisted on meeting the main anaesthetist at pre-op to pass on the information and knowledge I now have. This was gratefully accepted and we have been able to liaise on this. So everything is in place for my sons forthcoming surgery.. I will of course be worried out of my mind and I am trying not to think about it now..

    But communication, the passing on of the facts,and repeating it to everyone involved is what is needed.

    with regards to my sons surgery, the consultant advice states that 'some patients have slower healing process. Additional suturing and being ready to maintain pressure tape/ bandaging of skin incisions for longer to encourage healing and to reduce risk of papyraceous scars'.

    I have read that with EDS there can be excessive bleeding and also a resistance to anaesthetics with some people.. If you take this information - HMSA and EDSuk will have it- and explain how this affects you, then safeguards will be applied..

    I know the prospect of surgery is a worry, but as long as your surgical team and carers are fully informed, then the surgery and after care will be successful for you.. Take care and very best wishes 🙂 xx

  • I respond fine to a full anaesthetic, but not to a spinal block or a local, like many of us. I now have dental stuff done either with no anaesthetic or fully under. If you explain your problem with anaesthetic, they should be able to top it up and monitor the anaesthetic. My last skin procedure wore off after about 5 minutes so it hurt quite a bit - explain to the surgeon that they need to do the procedure quickly just in case.

    I have endo too but I am in peri-menopause and I am not having an easy time with it at all. Doctors want to insert a Mirena coil to solve it, but I don't want that at all. I am concerned (irrationally as far as doctor says) that it could cause a prolapse, and don't like the idea of something being left in there.

    However it is an effective cure for endo - if you don't want any more children it is worth having done just to fix the endo. Doctors won't give me HRT because of my uncontrolled high blood pressure (on 4 different meds).

    Let us know how it goes.

  • I know how you feel, I feel exactly the same about a coil, it just doesn't feel right to me, the thought of it being in there leaves me feeling weak, and I do worry, with this connective tissue condition, it may slip and move and not stay put.

  • Hi ladies, re the mirena coil, it works for some it was horrendous for me, made my already bad periods worse, ended up with an ablation in the end which has been wonderful, I had a prolapse many years before the coil and have another now, I think it's a case if your going to have a prolapse because of the connective tissues you will get one anyway.

    I'm maybe a little jadeded about this coil and would recommend not having it, but I have been having issues for many years and this coil made it worse, whether it was the EDS or not I'm not sure as I have only just been diagnosed, so it was not factored in at the time.

    Jan x

  • Yep, you just confirmed my general feeling about inserting things where they just don't belong in somebody with a massive connective tissue failure.

  • I don't know if they are related but you should be fine with a general anaesthetic. Just let your surgeon know about eds and they will keep an extra eye on you. I had a few surgeries under general anaesthetic and never had problems. I'm waiting on a surgery at the moment and just got the know that it will be under local anaesthetic instead (was expecting general) quite nervous about that now as I do get problems at the dentist. At least I will be awake and can tell them to stop if needed

  • Explain your problems in detail beforehand (I usually do) and if you don't have high blood pressure ask for anaesthetic with adrenaline - it is more effective than straight anaesthetic, but for somebody like me with HBP - I though I was dying with the way my heart reacted the first time I had it.

  • Hi all

    I've been told the same - last year would have been diagnosed EDS type 3. Also suffered with endometriosis for years and am saddened to say awareness by GPs has not changed. Recent press confirms this. I eventually was fortunate to be treated by Mr Richardson at the Chelsea and Westminster hospital. Wonderful man and I don't put them on a pedestal that often!

    Goodbye for now

  • I had horrible endometriosis in my 20s and 30s. Didn't have a diagnosis of EDS until last year (I'm now 57) but the endo, dysmenorrhea since high school, preterm labor in my one successful pregnancy were, as I can see now, completely in the EDS galaxy. Don't know what to tell you in terms of what functional difference it makes but it did give me a sense of narrative throughline to make sense of the many weirdnesses my body subjected me to reproduction-wise.

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