QuestionHello Lori Jean!
I'm 23 and have endometriosis, fibromyalgia, and am soon going to find out about my fibroid situation, as I've had an internal ultrasound recently that discovered one (Or more, I'm not sure). I am disabled, my limits include not being able to sit down for too long, not being able to stand for too long, not being able to walk for too long, I am easily tired, easily sleepy, etc. My fibromyalgia is pretty bad, it wakes me up or keeps me awake, and so I don't sleep that much - even with sleep aids. So very tired! I hope that gives a good but brief picture of my illnesses. I also have asthma, IBS symptoms (still have to do lower GI test again since the first time it was done incorrectly), and have emotional problems due to the pain and discomfort. I am on a lot of medications, vitamins, and I am walking and doing aquafit as much as possible to get better.
The endometriosis has been getting worse lately and I have been advised to consider more serious treatments than I already have.
I have tried: several kinds of individual hormone pills (estrogen {as I can get 4-month long periods, and we have to stop the bleeding}, provera), Depo Provera, Birth Control Pills, acupressure, acupuncture, and I may be forgetting a few things as my memory is pretty bad. I've been on strong painkillers, NSAIDs, OTC painkillers lol, but nothing seems to control the pain... well the strong painkillers did but it was deemed unsafe to continue using them longterm. I am seeing a GP, a Gyn specialist who deals with endo a lot, and various other specialists from time to time.
It has been suggested that I try one of three paths in the very near future, and I intend to research them to the best of my abilities (even if I dislike them!):
1. Induced Menopause (GnRH) - I am very hesitant about this, as many women seem to have bad experiences with this. And since it is temporary, I'll have to deal with the same later on, I've read this in books and the internet. It is also very expensive, and in case I don't get financial support soon, I won't be able to afford it, unless it is really worth it - then I will find a way!
2. Nerve Ablation - there's not much information on this in terms of long-term effects. I have read in some places that the symptoms can return, and perhaps worse. However I need to do more research.
3. Total Hysterectomy - this is very permanent, however it's the one I have the best feeling about. I certainly don't want to jump into it. Me and my partner have discussed adoption in the case I want children, and we are both okay with this. We may get some eggs frozen, however I'm not sure I want to pass on my illnesses to another generation! I have read very positive things about this, if HRT is taken, and I have no problem with HRT at all, or using lubricant to help with sexual problems caused by dryness. Many of the symptoms of menopause, I already have, so I'm not sure if they'd get worse or stay the same.
If you need more information, please ask!
So a very tough and serious decision here, that I will not take with a lack of education. Your opinions and advice are GREATLY appreciated, honestly. I am aware that your advice is not the advice of a doctor, so I will not foolishly take the written advice over that of the doctors. But I will take them as advice, as a spring-board for more research avenues, and as good points to meditate over during this difficult choice. Your personal (or people you have known) experiences with these treatments are appreciated!
Please write back when you can, I await your response eagerly.
Take care, be well
Em of Canada
AnswerDear Em:
I wanted to get back to you ASAP. Sorry if it took a minute but, I just found out I may have Crohn's disease along with this Endo crap. Yea. I would try and exhaust all possibilities BEFORE you get a Hysterectomy. It is a drastic thing (I have had a TOTAL HYSTERECTOMY) and I still have problems, but the TERRIBLE, DEBILITATING CRAMPS ARE GONE. I now deal with HOT FLASHES, NIGHT SWEATS, MOOD SWINGS, DEPRESSION and Lots of Adhesions. I am OVERALL glad I did it. I wish it hadn't have taken me 7 surgeries to end up getting it "all taken out" in November of 1994.
It's been that long and I still have problems. It is like you trade a bunch of problems and PAIN for DIFFERENT types of other health problems and PAIN. Yes, I still have pain. No where near as bad. The Nerve ablation had sounded good to me too but, the cons outweighed the pro's. I took Synarel, Danazol, Danocrine, Gnrh antagonist (Lupron 3x) and Depo Provera. I now take Prempro for HRT since my Hysterectomy. Those GnRh hormomes do alot of permanent ireversible damage to your body (Lupron). If I knew what I know now, I would've never took those shots of Lupron!!!!
Look up on internet Lupron Victims Network and you will see what I mean. Best of luck. Write Back if you need anything my address is watkins1024@aol.com
Sincerely,
Lori Jean Watkins
Central Missouri Support Group Leader
Endometriosis Association
