Quote:
Originally Posted by em1080  I would love hear your story! I have PCOS and endo, and have wondered if hysterectomy would just be better for me. So now what happens? Do you use hormones? What was the risk of doing it so young?
Sorry to bombard you with questions, and you may not know all these answers  But I'm 28, and so I'm sure you understand...I've been told I'm too young for this surgery and have not been given any information.
So happy to hear you are doing well. |
I was diagnosed with ovarian dysfunction in 1997 at the age of 15; needless to say, it was probably PCOS, but the syndrome was still fairly obscure back then. Officially diagnosed with PCOS in 2004 after putting my ob/gyn at the time under intense pressure to do the appropriate testing. Had ovarian drilling in May of '08 (in conjunction with endo surgery, see below).
I was diagnosed with endometriosis in 1999 via laparascopy at age 17. The gynecologist thought the pain was all in my head, and didn't even issue an apology when the surgery proved her wrong. Had another operation in 2000 to attend to the adhesions caused by the previous surgery. Had a Lupron injection and stopped taking birth control pills in 2001 and had NO periods (hence little endo-related pain) until 2006. Bled for several weeks straight (full-on heavy bleeding, not spotting) that fall. Went on birth control again in 2007, and the endo pain came back with a vengeance. Had another endo surgery in May 2008; it was upgraded from the initial Stage I (from '99) to Stage III. Got a staph infection from that operation and it took me forever to recover. This month's (June '09) operation with a different doctor showed that the surgeon from last year pretty much butchered me. The endo somehow made a comeback in 11 months. I was very lucky to avoid bladder involvement, but everything else (ovaries, ligaments, uterus, pelvic wall, colon) was covered in endo and scar tissue.
The sugery this month was a complete hysterectomy, and they took both ovaries as well. I'm on hormone replacement therapy, and will be until I'm at least 50. The biggest medical concern is that women who have had a hysto can have bone density issues. That's not a big worry of mine because I'm a two-time cancer survivor, and four years of treatment has screwed up my bones anyway. There's other concerns regarding sexuality issues (vaginal dryness, lackluster libido, etc.), but if a hysterectomy is used to treat a horrifically painful condition like endometriosis, I think the patient's sexuality has already taken a huge hit anyway!
You're at the first year of age when doctors will consider doing a hysto. My doc pointed out that I'm two years shy of the "magic age of 28"; he says that the medical community considers a patient to be settled enough and have a defined lifestyle by that age, and thus a woman can properly choose whether or not to choose to have her baby-making abilities permenantly revoked via hysterectomy. If you're 100% okay with the idea of not being able to ever conceive, then don't back down with your doctor(s). If need be, keep looking until you find a doctor that will cooperate. It is YOUR body, and you have the right to choose what to do with it!
Today marks four weeks since the operation. I look and feel fantastic. The only thing I've noticed is that my energy levels are a bit wonky. I have TONS of mental energy, now that my mind is free from dealing with intense pain 24/7; however, my body is still adjusting to a big change, so there's a bit of physical fatigue that's going to take a while to go away as we tweak the replacement hormones. The biggest surprise is how it's affected my looks- I don't know if the PCOS was to blame, but I always had really low estrogen anyway. With the supplement, my skin is great, nails are stronger, hair looks better, and best of all, my boobs and butt are way perkier!
If there's any other questions you have, don't hesitate to send me a private message!
