Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
I am so nervous and upset because I just received my 2nd shot of Lupron at my doctors in Boston,Ma. They have scheduled a lap surgery to remove 4 large endomitriomas, and burn any adhesions and hopefully decrease my pain. I was originally supposed to have a total abd hysterectomy, but the surgical committee met and agreed that it takes 3 months for Lupron to put a woman into menopause, so its impossible to tell if its working because it had only been 1 month. I am very overwhelmed because there is so much negative information re Lupron but I have Lupus, MS, and a couple other autoimmune diseases, so I am not in good health. The doctors felt they needed to see if the Lupron works first because there is a small percentage of woman that do not go into menopause, and it has shown that these same woman also do NOT benefit from a total hysterectomy with regards to endo pain. I asked, if I am that person, who does NOT go into menopause from the lupron and continue to bleed and have this horrible pelvic and back pain, what else can you do for me? They said not alot of options because I can not take any estrogen because I have a clotting disorder with my Lupus and it increases my risks of blood clots, strokes,
The doctor knows I have been worse since the Lupron, and now I had a 2nd monthly shot, heavy bleeding, horrible pain, and mood swings and depression so bad. They said these affects are common and unfortunate but if the Lupron works, it will help and be worth it.
Please give me some advice, I cant stand it anymore. I can not go on like this, and all this info on Lupron is scaring the hell out of me,
thank you so much for your help
The doctor knows I have been worse since the Lupron, and now I had a 2nd monthly shot, heavy bleeding, horrible pain, and mood swings and depression so bad. They said these affects are common and unfortunate but if the Lupron works, it will help and be worth it.
Please give me some advice, I cant stand it anymore. I can not go on like this, and all this info on Lupron is scaring the hell out of me,
thank you so much for your help
I'm not 100% sure but I think the lupron and zoladex injections are for exactly the same purpose. Also when I had my lap, I was told that they cauterized my adhesions and did the laser work on the endo which was on my ovaries. And, even if they offered me a hysto I wouldn't even consider it cos even tho the injections put me through the motions of the menopause, the pain didn't change.
I was in your exact situation regarding the endo. I had the zoladex injections for 6 months after my lap and it was absolute hell. I went through the menopause with the injections but they did absolutely nothing to control my pain.
So it's been 5 months and 2 weeks since my last injection and I've had a horrendous time waiting for my period to return but it finally started 6am fri morn just gone.
So I had my follow up appointment with the endo doc about a month ago or so and she was absolutely useless, completely arrogant and had no ability to empathise. I told her the hell I went through on the injections and she told me my only option is to go through the injections for another 6 months with added hrt. When I asked her why, she told me it was my only option. Actually, she did ask me if I had thought about concieving. I just shot her a look that could kill. (even if I would consider it, we all know its not a cure, there is no cure. Plus she knew I've been single for about 8 years). That and the mirena. I told her no way in hell was I putting myself through all that again when it didn't work. After I told her that, she just didn't want to know and wasn't interested and in her own words " I'm obviously not willing to compromise ". I could have easily jumped over the desk and throttled the nasty witch.
Like yourself, I had the most awful depression, mood swings etc etc. If I could have stopped the injections I would have but I knew they would always be able to throw it back in my face that I wouldn't have known if it had worked or not because I hadn't completed the course. So I gritted my teeth and just had to get on with it. I can't tell a lie, it was one of the worst experiences I've ever been through but I don't need to tell you that do I hon?
So the only advice I can give is to try your hardest to get through these damn injections so at least that is ruled out for you then. I'm so sorry you have to go through all this crap, it's just not fair on you.
I hope this has helped a little but please email me if you want to chat about these injections or anything at all. I've recieved so much support from you ladies on here that I'm falling over myself to reciprocate.
I hope something changes for you soon hon, I really do.
Take care ok
Lv Nad xxxxx
ps. I'm also amazed at the differences in docs and what they tell us, it's as if we all get told different things and they wonder why we're all so confused and so badly stressed out.
On another note, I agree with frenchy98, seek out a specialist. Waving the "magic wand" over the endo may eventually make it worse and cause adhesions. It's all about money with these doctors. The surgery she is talking about is excision surgery and doctors don't like to do it because it takes much longer than lap. and they have to pay staff.
Be the "squeeky wheel", call them everyday if you have to! What does a bill collector do, they call until they get what they want!
I will try and forward you some info that french98 has sent me, maybe becoming more educated will help and make you more proactive, it has helped me.
Good Luck! If you need to talk, just contact me!
much love