Unending...what to do?

I was finally diagnosed with Endo a couple of years ago after 15 years of suffering. However my diagnosis was done without a Lap as the Gyno said due to my history of having had an op there would be a lot of scar tissue and the Lap would irritate this and cause more pain than good. But from all my other symptoms she was happy to diagnose me with Endo. It was lovely to finally have been listened to and to have an answer. The Gyno mentioned certain medications but said due to being young and not having had children yet she felt these would not be appropriate, due to the menopausal effects. So I carried on with no pain relief.

Since then I have been plodding along. However over the past year and especially the last 4 or so months I have been suffering daily and am lucky to have a couple of days relief, rather than the week or 2 relief. I have the excruciating abdominal pains where I can be curled up on the bathroom floor unable to move. Lower back pain. I feel nauseous everyday and some days this is so severe that I feel like I will be sick at any minute (but never am). I suffer from stomach problems and have pain when having a bowel movement. I also get "saliva mouth", where my mouth feels full of saliva even if I have a drink. I can feel light headed and have hot flushes. I also suffer from painful intercourse which can then cause abdominal pain the next day too. Sometimes a symptom can just come on with no warning. Due to all this I am not getting out and about much,therefore am not getting to see my friends and family.I am not being able to work and my last voluntary post dismissed me due to the days I was having off. With all this my mood is very low and I am very teary due to the pain and frustration of it all. I worry about the effect it has on my husband, with me being in tears, in pain and not being much fun for him. He is being a super star, gives me cuddles and reassurance and wipes away my tears. It just seems to have become unending.

I don't know what to do? Should I go back to my GP and ask to have a Lap? Although I am worried it may cause more harm. I just want my life back.

10 Replies

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  • Dear Squidgy. Go back and get yourself a referral. You need to have that lap to see whats going on in there. Yes, it does lead to adhesions,unfortunately but it sounds likely that you have these anyway and if these can be freed up then your going to get some relief. This doesnt go away on its own an you need to get well again. Dont suffer lovely youve got this far ,too far and need your quality of life back. Massive hug,make that appointment tomorrow get the ball rolling. It can take weeks for the referrals to arrive so sooner the better and then you will feel better. Good luck jx

  • Thank you jalo69, really appreciate it. I have reached the end of my tether now and will not sit in silence anymore. Thanks for your words of encouragement x

  • Totally agree with Jalo - get a referral ASAP, preferably to a decent consultant! I never fail to be amazed by the rubbish some consultants come out with. I would agree that having a lap and then TTC would be a good idea, and my consultant said he sometimes advises endo women to wait until they want to ttc before doing a lap, but it seems daft to say No full stop. On the menopause symptoms - for me (young-ish, no kids, ttc 3+ years) it was preferable to being in pain.

    In the meantime ask your GP for pain management - cycling inburpofen, codeine and paracetomal can help. There are other painkillers and things like tranexamic acid and mefanamic acid, even physical therapy can help.

    Good luck honey and keep fighting x

  • Thank you Cloudy rain, really appreciate it. I am, like you, with no kids, now 30 and decided preferable to be in pain than menopause. I was given some mefanamic acid from the Gyno but this doesn't seem to touch the pain now, esp when it is really bad. Also as I am trying for a baby so I am not wanting to take anything which could scupper the chances. I am trying Reiki at the moment...not done anything yet but only had one session. Thank you for your words of encouragement. I am going to keep fighting x

  • Squidgy I agree with the others, never take no for an answer, it is not acceptable, and you should seek a second opinion and a 3rd if neccesary.

    here's the link to the list of the best endo centres in the UK, find the one nearest to you, and ask your GP to refer you to the centre.

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

    They have experts on endo and bladder and bowels too, and all will be familiar with complicated cases and especially adhesions.

    I had previous surgery and yes there was a massive amount of scar tissue and adhesions from it and from the endo and the surgery was a biggy,but they did cut back many of the adhesions to free up any organs that they could. Not all, but many, and they cut away endo where they could and lasered some of it too.

    The only treatment to avoid if you are not wanting to risk shutting your ovaries down for good or for a long time is Hormone Treatment on GnRH drugs, but there are birth control pills, norethisterone, mirena coil , nexaplon and numerous other things to try which do not stop you from having a baby when the time comes for you and your partner to start.

    They can all be stopped in a short time, or removed at short notice meanwhile could make all the difference to your quality of life.

    And do tell the doc about becomming increasing depressed with the symptoms, a short course of anti-depressants could also be very helpful to you.

    And persisitant unmanaged pain does bring on the blues big time, so that might be worth a look at too.

    wishing you better luck with your next appointment

  • Thank you Impatient for your kind words and the link. I shall look at this and make a note to take along to the GP.

    Yeh I have been avoiding the Hormone treatment as I am trying for a baby. I was on Loestrine birth control but have come off it as trying for a baby. It is also why I am not on anti-depressants as the GP said it can damage a feutus so better to be clean off them. (I have been on and off anti-depressives for a good few years now). I suppose it is deciding whether to pause the baby trying and go back on them, but then I may just end up back at square one again when I try again. This is why I am still trying to push on. But like you say I cannot keep going as it is ruining my life. I will try again talking about it to my GP. Thank you again for your words of encouragement. I am going to keep fighting x

  • P.S - Just looked at the link but not one close to me (I live in Lincolnshire), however my sister lives in Poole so maybe that one I could mention! Thanks again x

  • Thank you Impatient, Cloudyrain and Jalo69 for your kind and helpful words. I will definately do as you have suggested and will let you know how it goes. The GP has referred me to a Gastroenterologist who I am due to see next week and said to come back after that so I will go along and then get to the GP again for a referal to a Gyno.

  • Good luck Squidgy its another step closer to starting your family. All the best and do keep us posted :) x J

  • Thanx, wil do! :-)

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