After giving up for the last two years on any help I’ve needed to get help due to the pain.
Diagnosed stage 4 five years ago, ablation but no endo removed in lap, as said would remove during hysterectomy.
Last scan two months ago, two large cysts on left ovary, but he tells me they’re just most likely chocolate cysts, they prob are.
Proceeds to tell me that surgery is unlikely due to how much endo and is very risky to other organs, so here have the hormones.
I’ve not read good things about these hormones, that I was told six months only, but apparently can now have for years, at what expense to the rest of my health.
I’m already on medication for depression and anxiety which I told him, and he said that this would most likely cause it to be worse.
Just feel stumped as usual x
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maxine71
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Hi! Hope you are doing well. I can totally relate to your story. I am in the same position. They found endo during a laparoscopy. Had an ablation. Thought i was ok and battled pain for 2 years. They said although i will need a full hysterectomy its very very risky as its a mess in there. They suggested zoladex. Consultants werent much help tbh. I took it for 6 months. Every time i went to hospital each month i got told different things. One doc said 6 months, one said 9, one 12 and then you read on here people have it for years. Anyway, i had 6, on a pain level it was amazing. 80% of time i was totally pain free however i hadnt noticed other changes i had. I have depression already but my mood went down hill. I was suicidal. My hair started falling out. I lost so much weight. Really scary time. 4 months after having my last injection the pain is back and worse than ever. My consultant discharged me with no follow up! Im stuck too. I dont want hormone treatment. I kno noone wants surgery but i do feel there has to be something that can be done. X
I regret taking the zoladex totally. I wasnt told about the worsening depression etc etc. Really regret it. Sat here with hot water bottle and pain killers. Grrrrrr x
It sounds like an horrendous drug, and I don’t think they know enough about the long term effects of it.
I’m already on tablets for depression and anxiety, which I told him, so I don’t think it would be a good idea to risk that currently as I’m not long out of a bad episode with that.
I think I am going to get a referral to a specialist centre, and see where that takes me.
Good luck to you too, it’s an awful condition, and that because it’s not deemed as life threatening, I always feel like they treat us like ‘well be on your way’ ‘live with it’ ‘put up and shut up’
Sounds like your consultant was aware of the risks to your mental health which is really good. My consultant knew my condition but gave me the drug anyway. At my worst, i sat in the middle of a main road in my pjs! Very scary few months.they really do just pat you onthe back and send you off. Some people seem to get really good care and are offered excision treatment etc. There should be a standard care procedure. Hopefully a specialist will be best. How do you get referred on to one? X
That sounds so awful for you, I’d like to see some of these doctors suffer it for one day, and see if their perception changed.
And no, he didn’t seem bothered that I’m on medication for depression and anxiety, I said I was just coming out of a very bad spell of depression and that I didn’t think it would be a good time to start it.
To be honest, it’s up there with some of my worst appointments, I feel that the research I’ve done in the past five years since being diagnosed, that I probably know more than him, his attitude was very standard and quite outdated information.
I will be speaking with my gp and attempt to get the referral to the specialist centre xx
I totally agree with you on that one. I was hysterical in what turned outto be my last appointment. They just looked at me and told me to sort out my depression and go back if i needed to??? Part of my depression is pain related so its not an easy situ. They told me to google some of the questions i had?!? Totally wrong. It was my gp who said i shouldve been more closely monitored on zoladex. Of course i will need to be seen again, they should kno that, it only gets worse. Im now too scared to try anything.keep us all updated on how you get on. Its such a worry because it affects our whole lives. Take care xx
Totally agree that depression is added to with the pain, the endless cocktail of pain meds to just and try and function each day, I think I have no stomach lining left due to the damage of them.
Same here. I highly recommend cbd oil for the pain/depression. Expensive, but better than pills for the stomach. It makes the pain tolerable. Here in the US doctors just shove ibuprofen at you, as if that helps!
Yes I know , I tried to commit suicide but there were good times sometime. I believe I have gained 5 to 10 yrs with losing other organs. My partner walked out which to me far out ways all of this. Without his support everything is terrible. I wish he would speak to me. I wish someone would explain what I was coping with. This disease makes me wonder why I am here? What have we done to get this?
Hugs! Its not your fault you are sick and doctors are no help. Keep taking care of yourself anyway you can. You are worth the struggle and deserve to be healthy. Keep searching for answers. None of us deserve this condition.
A general gynae. I was told that my local Gynae was a bsge accredited centre, I found out a year or so ago that it was pending and never made it to be accredited, but I believe I have two within a 70 mile radius x
Ah. Then if it were me I'd check out the bsge centres reputations and wait times on endo revisited Facebook then go back to your GP and get them to do a referral as a refractory case to your preferred one. Then at least you can get a second opinion by a more skilled and endo excision experienced surgeon.
I am in the same position. I can't have any more opps without losing bowel, maybe part of stomach and bladder. I took Zoladex for 10 yrs as with steroids I can not take neither anymore due to brain inflammation and pancreatitis. There I am on Codiadramol and morphine sometimes. There is nothing more they can do. I suggest you take the Zoladex the cyst should shrink but they shouldn't grow more. If you don't take drugs you risk further damage to other organs and probably shorten your life by organ failure and or have a surgery to take away organs still have pain and have a bag and need a district nurse visit you. My ex left me, I can't work but losing other organs at the moment is something a step to far . Zoladex is a good drug just take it ! I took it too long that why I can't have it further. I managed to stay on it til I was 52. Now 60 still in pain today through the menopause, I have depression, anxiety. Take Venlaflaxine which has been a wonderful drug. I have managed to get the dose down but was told cos of brain damage and possibly of Endo in my brain as well! I am unlikely to get off it. I don't think you have the kind of choices you want. Sorry, very sorry, I wish I could solve this for all of us. Joy x
I really understand your situation. I've got stage 4 endometriosis and adenomyosis. I'm waiting on surgery to have pelvic clearance. Had laparoscopy last March but they couldn't remove the endometriosis as it's everywhere. I know this type of surgery is very complex and I can only get it done by two specific surgeons which is why I'm still waiting but it can be done. Obviously, I get that not everyone wants surgery and certainly not the full on type I'm getting but I've never wanted kids so more straightforward for me especially since my periods were very painful.
Surgery is an option and I would urge you to ask for a second opinion. The pain of endometriosis is bloody awful. Ask to see an endometriosis specialist who can perform the operation that you may need.
Anyway, I'm on decapeptyl injection. I was on one every 4 weeks for 6 months and the last one I had at end of December didn't work. I had pain and bleeding so I've been changed to having the 12 weekly injection which I received on Monday. I found that it affected me pretty quickly. Flare of endometriosis pain, hot flushes which had me sitting in the garden in the middle of the night to cool down (I live in Scotland so it was cold) and defo ragey mood swings. I am on hrt as well which I think is now kicking in a bit as I feel a little better. I've also had random bouts of sickness and loss of concentration. I am on antidepressants too but haven't noticed my mood being affected too badly. I would say fatigue as well has increased but manageable for now. It is a harsh drug but for me it has stopped, for the most part, severe endo pain which has worked for me. It's not an easy drug but maybe ask for the 4 weekly to start with as then if it doesn't work it'll be out of your system quicker.
Hi ladies, I’m sorry to hear your having a tough time too. I’m also on the injection. I’m due to go for my third one next wk. My mood has been up and down. Twice I’ve felt really low and felt like I didn’t want to be here anymore. I did tell this to the nurse on my last visit and she moved my next app forward for me. It’s the no sleeping that’s killing me the most. I’m so so tired. I wake up every night and sometimes a couple of times. I had most of the symptoms listed for the injection b4 I had it but I don’t see any improvement as yet and I’m now on hrt too. I’ve not yet had an opp as they said it was risky as connected to my bowel. I’m now thinking if the symptoms don’t improve I have no alternative but to go for the opp.
I hope u all see some improvement soon. Sending big hugs x
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Fed up :(
Fed up no Endro from lap
Fed up of bleeding randomly (tmi)
