After bcp, Mirena and depot injection, and still no symptom or pain relief, asides from GNaH tabs what other choices are there?

Im 34, only diagnosed 8 months ago via laparoscopy but suffered for many years. I have no children sadly and am losing hope I ever will, I have tried birth control pills, the Mirena (horrid experience, 2 weeks it stayed in, and even that was a miracle, bloomin thing was put in wrong, threads cut way too short, and it embedded in my cervix but my uterus was still trying to push it out :( - ouch) and also the depot injection (my 2nd time on it, was on it when early 20's but long term history of anorexia meant missing my periods ironically wasn't my best option for risk of bone loss!!) and anyway, am due to see consultant in January (if I can wait that long) and I don't know what to suggest now. I am in severe pain daily, worse at period time obvs, am concerned the peritoneal inclusion cyst is back too, in March at op they found it had grown from a couple of cm's, to the whole of my pelvis, front to back, all my left side and near to the middle too) she drained it but it feels like it's back judging by the pain intensity, I can feel a round hard ball lower left which as it's feelable from the skin by pressing down. I know there are the GnrH or whatever they are called, but I already know you can only be on them for 6 months, so what would that leave then? ANY suggestions etc would be so appreciative, I don't know if this makes any difference but from memory they found endo on both ovaries (ehich she left!!), peritoneal wall, bowel. Adhesions were that thick she had to cut away lots before she could even see what the mass was ie the peritoneal inclusion cyst, and a loop of bowel had adhered to the ovary, fallopian tube and uterus. No kids as I say. Already on slow release and normal morphine plus pregabalin for nerve related pain.

3 Replies

  • My sympathies are with you,as will all of us on the forum.GNRH antagonists,work by switching off hormone production and can be very effective.Although you can only be given them for 6 months at a time,you can have a break.I was on various kinds - Synarel,Decapeptyl for 2 years.The Decapeptyl( monthly injection) was almost miraculous and got me from a bedbound and agonised state to being up and walking about.I had very few menopausal symptoms,except a hairy chin(easily plucked out) and felt so well.However I also take steroids for asthma and when my bone density was scanned I was found to have osteopenia.This is the reason they will not give you more than 6 months at a time.I agreed to take an HRT patch alongside it( Never understood feeding in more oestrogen!) and as a result I was allowed a further year of decapeptyl.In the end you have to make an informed decision.My pain( and other medical issues) had made me bed ad housebound for 5 years and I had no quality of life,just living from one painkiller to the next.I was prepared to try anything to prevent having to have any more extensive surgeries.

    If you still have hopes for children,the obviously a medical menopause is not an option,but GNRH treatement was a huge help to me.The only problem with all hormonal "suppression" is that it only keeps symptoms at bay and when you stop back it all comes .I am in this position now,as have stopped 4yrs treatment with s depo provera and now being bullied into comp[lete pelvic clearance.

    If you are open to alternatives,there are lots of great books on the nutritional treatment of endo.Someone earlier posted 3 great websites on the natural treatments.I am presently seeing a medicinal herbalist and though It os a slow process ,she is tryimg to help my body balance hormones and also working on my liver and bowel and lymphatic system.

    Dokeep in touch and let us know how things going.

  • Hi daffodil, thank-you for your reply. I also take steroid inhalers (symbicort) so with that plus my eating disorder history, I do have a higher risk of bone density loss etc. I also am in a stupid amount of pain daily, even morphine does not get rid of the pain. When the pain gets to the point when I go rigid, just feel I can't move etc then I get down A and E where they give me iv morphine, but even then I still feel some pain, even though it is not as severe as before the iv plus the tabs and oramorph on top! It is crazy! I know that they think I cannot be in as much pain as I claim or display, but I only wish I was exaggerating!! I will be honest, although it is not a cure etc, and especially as endo has been found on other areas aside from reproductive organs, I am tempted to ask for a full hysterectomy, just clean out the lot, have had enough of them! I would need confidence in my gynae that she would find and destroy all the endo spots though for that, and sadly I do not have that confidence. She messed up my last op if you ask me, and since has messed up with my care, and now am being passed from pillar to post, my Gp disgusted with my 'treatment plan' and care, likewise the family planning clinic I go to when I am worried, as they can give more time than a GP so feel listened to there (sadly I do not go for actual family planning, that would be a dream come true though!) I do wish to be a mum yes, but with no show in my life as of yet, it seems more unlikely as time goes on that I ever will become and stay, pregnant. I will ask about GNRH antagonists and especially the monthly depot injections, so thank you. I do also have a great book I purchased in relation to diet and natural ways to help ease endo symptoms - Endometriosis - A key to healing and fertility through nutrition, by Dian Shepperson Mills and Michael Vernon. It's packed full of info, and I must say I haven't even read 50% of it, but you can dip in and out of it, where you want to. It isn't necessary to read it from cover to cover, start to finish if you get my drift? It seems such a harsh strict diet though, and has put me off so far, but then again with the pain and symptoms the way they are, and hardly ever leaving home, it must be worth a go. I was wondering if any other natural or alternative approaches women have found helpful at all? for example, massage, reflexology, hypnotherapy etc etc. Thanks again for your reply, and I hope too that you find some relief and answer you need soon. Have you any idea what you will do next? Hugs fwllow endo sister xx

  • Hi, I'm 37 and have a long history with Endo. I have no Children, was on Zoladex injections twice over 2yrs as you are only allowed 6 months @ a time, the 1st time was brill I felt really good well able to walk about & no heavy bleeding, but with the Endo stuck to my bowel & a 5cm cyst on my left ovary I was taken in to have it removed & the Mirena coil put in as I had all the treatment they could give me so this was a last resort. I was taken in on the 30th of Sept the coil fitted but they could only drain the cyst as it was to dangerous in case they damaged my bowel, was out of Hospital 2wks and became very sick tummy was all bloated so I went to my GP & He said I would have to go to A&E, so I headed down to the Hospital thank-god the Hospital that my Gynae Doctor works is the 1 I had been sent to. They came took blood checked me internally & found the Cyst was back in a matter of 3weeks bigger & the blood work came back that I had a very bad infection as my CPR levels were up to over 800, i'm sorry I don't know what that means but they were very concerned I was given a bed & had to stay over a week. I talked with my Doc & told Her that I wanted the coil out as I had not been well since it went in, so they tried to find the strings but couldn't & it was getting very sore so I told them to stop, that if they went to find it I wanted knocked out for them to find it as it had went in under a General. I also cant take penicillin so I had to be given 3 different antibiotics. I started to get better & they talked me into keeping the coil in so I went home to rest until they could make sure the infection was away to be able to take the coil out, but I was only out 2wks when I started to get a fever my temp was 38.7, so my own GP told me to go back to the Hospital, so I did, I was kept in over a wk this last time, & I took a very bad reaction to 1 of the antibiotics as after they had give it to me I felt like I was on a bed of nettles, or been out in the sun & had got badly burned, I was on fire I left the door open so the nurse could see me as I was afraid I would burn up into a pile of ashes. They took me off that antibiotic and after a few days the reaction started to ease but my skin started to peel I was & still am flaking all over the place, but the Cyst has got bigger it's @ 7.2cm x 6.5cm, and my Doc has told me that she has to take the 2 ovaries so I have made up my mind & I want all away, I just cant take any more, the pains the not being able to get out of bed the bleeding the bowel pains & not being able to sleep but being tried all the time. You keep your chin up & let me know how you are getting on.... Wish you all the Best..

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