QuestionHello Karen!
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 Emille, You are right that the GNRH is very expensive and it is limited to only 6 months.. I know nothing about the nerve ablation so I can't help you with that.... I do know that even with a hysterectomy, it may not get rid of all the endo tissue... However, if you choose this route, you MUST make sure that there are other qualified surgeons in the operating room who can check your entire pelvic region, colon/intestines, kidneys and bladder so that all endo tissue that has spread to these areas can be removed as well... If not they will only spread and continue to cause you problems....
Since endometriosis is often hereditary, with or without gathering eggs for future use, may not quarantee that it will give the child the endo or even that the child will get endo, because it is not definate.... You see, I have never had endometriosis, neither did my mother, nor does my sister.... However, we were of the old school and used sanitary napkins and NOT tampons etc.... I tried very hard to get my daughter NOT to use tampons, but her being young etc, she used them and I honestly feel that this use of tampons and the 2 c-sections she had when she delivered her 2 children is what caused her endometriosis and NOT heredity... THere is no one in her family with endo....
Thank you, karen
