Medication advice

Hi Everyone, I've been diagnosed with endo through a laparoscopy a month ago. Following that I've gone through major open surgery to remove it as well as 4 huge choc cysts on both ovaries. In 6 weeks once i'm healed the consultant wants to talk to me about medication. I've read up online and the options don't sounds nice! I have no children but would like some with my partner some day. Does anyone have any stories, advice about medication? I'd like to hear peoples views who are going through this? I'm doing the endo diet too so hopefully that will help. Many thanks! F x

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  • Personally speaking and I'm sure others might disagree. Absolutely steer clear of hormone treatments. They are not worth all the trauma and side effects for what little temporary good they do. That's the Prostap, Zoladex, Lupron, decapeptyl and such like.

    They do not cure endo, they put you into medical menopause and to be honest the side effects for me were much worse and continuous than coping with my regular if heavy painful periods, because at least with the periods I was well used to pattern of pain and how best to deal with it, whereas everything that happened on GNRH drugs was new to me and extrememly unpleasant indeed and 24/7 for the 4 months I lasted on the drugs. So i speak with the benefit of hindsight, and knowing what i do know now about those drugs and how little effect they do actually have on endo while wrecking the rest of you, the risks simply are not worth it.

    I had a Mirena put in, and once that kicked in to working wow, that's been a life changer for me. So my advice would be to try it. It does take a few months to get going, but I've been trouble free from periods now for well over a year and it is a life changer in so many ways. It doesn't suit everyone, but it is worth trying because it doesn't mess you up anything like the hormone treatments do and it can make life bareable again.

    I too had a laparotomy and it took a lot longer than 6 weeks of recovery, so I'm just warning you 6 weeks is a bit optomistic I fear.

    I was barely back driving forwards only at 6 weeks, and still struggled getting in to and out of the car.

    By 8 weeks I was much better driving, could turn around more in the seat and reverse the car without too much pain. It's okay sitting there but turning to look over your shoulder really pulls on the the cut through tummy muscles big time.

    By 4 months I was still having a few niggle pains on lidting things or moving furniture or picking up kids or heavy shopping bags. so had to be careful.

    My bladder took 17 months to recover post laparotomy surgery but it was damaged in surgery. so for quite a while there i didn't expect it would recover, but mercifully it has now done so.

    I'm fine now post op, and the mirena is working a treat.

  • i find since i was first diagnosed you have to trial and error your meds....not everything works the same for eveyone...you have to talk to your gp about wat wud best suit you...xxx

  • I was on hormone treatment decapeptyl and livial hrt and it was the worst 3wks of my life in a long time. I had severe side effects and it was worse as you cant control these side effects, as impatient says its not long term and i think its a huge decision to go on this altho it may work well for you. I wish the gynae told me what might happen but nope i found out myself once on it. on just my 3rd of of decapeptyl i was in a bad place with my depression from a few yrs back had totally kicked in and that scared me the most and also panic attacks happening so i told gynae i wont stay on it. Make sure u get all the information and support before u decide anything xxx

  • I agree lynnie, being put on these drugs should automatically come with counselling. It is essential that all women are given ALL the facts, because they are so powerful, not just on the body but on the mind and mood and character as well.

  • Thanks so much everyone. Its good to hear it from people who have been tried these drugs. I'm going to try a natural way, diet and excercise. I've had a really poor diet which I believe has contributed towards the endo. So have got loads of info to follow an endometriosis diet. I'm a gym lover so hopefully that will help too. I too suffer with long term depression, so any medication that may hinder the progress I have made is NOT for me! The consultant seems adamant that I should be going on some form of medication, but everything I have heard really dissuades me. Thanks so much for taking the time to reply, i'm new to this disease so I really appreciate it xxx

  • I agree with those who have advised against hormone treatments. I was diagnosed at 15 and have been on various not-so-nice medications since then that pretty much did nothing to help in the long run. Most of the time the side effects were much worse than the benefits, and even the better ones made me very sick (although I find I react badly to a lot of medications anyway, so you may have better luck). I'm now in my late 20s and have managed to kick most of the stronger medications my GP had me on. I take mefenamic acid when the pain is really bad, but otherwise just use regular painkillers (and then only when I have to go out or to work). If I'm at home then hot baths/showers and hot water bottles are great. I kept one at work for a while over the winter as it was cold enough that I had an excuse!

    I generally try not to take anything at all as I hate feeling doped up, so do a lot of yoga (ashtanga really helps with pain) and massage (mayan abdominal massage helps mid-cycle, although not when bleeding). I've taught my boyfriend to do various types of massage, which is wonderful when I'm feeling bad. I also stay away from sugar, as I was told this encourages estrogen production and can make cysts and tissue build-up worse. I don't know if that's medically proven, but I haven't had quite the same level of pain since changing my diet (fortunately I don't have much of a sweet tooth, so it wasn't difficult). Soya makes it worse, as does certain types of dairy (although if the pain is bad, I don't feel like eating anyway). So I would definitely recommend changing your diet around if you haven't already? My sister has PCOS and has found the above also helps her.

    The worst thing for me is the amount of blood I lose, as I can get pretty anemic and then basic things like breathing and walking around is a pain in the ass. I take iron pills daily as well as other vitamins, and eat liver and greens covered in thyme and black pepper like it's going out of fashion! I hate eating meat, so that isn't fun, but it does help a lot. Dark chocolate is also good. I'm sure other members can point out more iron-rich food. I think keeping your weight low helps, as I definitely bleed more when I'm a few lb heavier.

    I know this won't work for everyone, but it has made a dramatic difference to me and I can function like an normal person most of the time now rather than a drugged up zombie. Three years ago I was discussing a hysterectomy with my doctor, as the bleeding and pain had gotten so bad, but I've been able to rule that out completely now. At my last scan, the doctor said there was a definite improvement, so I'm going to carry on without ops or hormone treatments for as log as I can (or until they find a cure)! Apologies for the wall of text, but hope some of it helps you.

  • Really helpful, thank you so much ladies for taking the time to send such in depth replies. xxx

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