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Old 02-10-2013, 10:36 AM   #2
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Re: Going for total hysterectomy scared

Originally Posted by linka View Post
Tests showed that I have PRE-CANCEROUS condition in my uterus and my cyst was NOT gonna dissolve on it's own and ultimately together with my doctor we decided on hysterectomy. I've had very heavy bleeding periods, unexplained heavy bleeding between periods, cyst that's giving me pain constantly and just keeps on growing and she thinks I may have an Endometriosis too. She said she is not sure till she'll cut me open and see.

So in a few weeks I am going for total hysterectomy. Very scared, afraid, horrified. Would I still be able to have sex with my husband? If everything including cervix will be removed? Would I still be sexually active if I am being castrated? The idea of not being able to have anymore children is sort of ok with me but I am just emotionally concerned if my husband will still love me (we've been married for 18 years now and I am not even 40 yet)....
Would I develop another infection after my operation since it will be an incision operation...would I grow facial hair without my own hormones? lol

I still have another appt with my doctor pre surgery so I might ask her some questions but it seems to me that abdominal hysterectomy is a very common procedure? I want to know what are the risks and what some women have experienced post operation.
Sorry you've had such a bad time of it! Your previous ob/gyn sounds like he needs to improve his skills! I totally understand your apprehension about this surgery. I felt the same way but, unfortunately, I dismissed those fears as well as my inner voice that told me something just wasn't right with what my gynecologist was telling me. I wish I'd listened to myself versus the urgings of others to go forward with the surgery. The surgical recovery was a breeze but the long-term adverse effects have been life altering. And my research and medical records show that I didn't need any organs removed.

My gynecologist (whom I'd trusted for many years) used scare tactics and lied about my condition as well as other treatment options. My life has suffered horribly ever since. I'm not even close to the same person. I don't even look the same because I aged overnight. I lost SO MUCH hair, skin collagen, and muscle mass. I couldn't function because of depression (never had depression in my life), anxiety, insomnia, loss of focus, memory loss (to the point of feeling like I was getting Alzheimers), nausea, fatigue, loss of closeness to my husband and children, loss of sensation in "strategic parts", and loss of everything female. And that was with HRT. And to add to it, I now have the body of a woman who's had a hysterectomy - the big belly, scrunched midsection, and flat butt along with the back and hip pain that goes with this loss of pelvic structure (integrity).

I've learned a little more each year since my surgery. I wish I'd done more research instead of trusting my gynecologist and allowing his scare tactics to rush me into surgery. I also wish I'd listened to my intuition. Here's what I've learned:

1) Hysterectomy is the most overused surgery after c-section. A study says 76% don't meet ACOG's criteria. Only 2% are done for cancer.

2) The first line treatment for endometrial hyperplasia is medication not hysterectomy. Pre-cancerous (abnormal) doesn't mean the cells will become cancer. Hyperplasia can cause abnormal bleeding.

3) Ovarian cysts can cause abnormal or breakthrough bleeding. They can usually be removed via cystectomy which preserves ovarian tissue and its lifelong hormonal production. But some doctors lack cystectomy skills and some recommend ovary removal because it's easier / quicker / more profitable (time is money). There may also be an insurance reimbursement issue with cystectomy versus oophorectomy.

4) Healthy ovaries are oftentimes removed at the time of hysterectomy. Our ovaries are like a man's testicles.

5) Get copies of medical records (including office visit notes, imaging reports, pathology reports) and then do your own research to understand your diagnosis, treatment options, and the risks and benefits of each before undergoing any treatment. Over-treatment can be just as harmful as (or even more than) under-treatment. I didn't get my records until after the surgery and they were quite eye-opening.

6) Sometimes quite a few opinions are needed because doctors in a given region tend to treat similarly whether that treatment is best or not. That also tends to be the case for doctors affiliated with a given hospital. And with hysterectomy being so prevalent, this is particularly true. Other pathologist opinions may also be helpful. Just as surgeons have various levels of skills, so do pathologists.

7) The uterus, ovaries, and fallopian tubes work together as a system and have lifelong functions (much more than reproduction). Specifically, I wish I'd known or understood:
- Why women's figures change after hysterectomy (thick, shortened midsection, big belly, flat butt), weight gain or not, and how this leads to chronic back and hip pain..
- The anatomical changes can alter bladder and bowel function and lead to incontinence and future surgeries for prolapse. And the mesh used in those surgeries can cause major problems (infections for one) and more surgeries. You've probably seen TV commercials about the lawsuits. I've had bowel problems since surgery.
- The uterus and cervix are key to sexual function and a lot of sensation can be lost when all those nerves and blood vessels are cut. My libido and response are nil. I used to have such great libido and response.
- The ovaries of an intact woman produce hormones into her 80's. The loss of these hormones has been shown by medical studies (can be found in PubMed) to cause many increased health risks and loss of quality of life.
- HRT can't completely replace the loss of ovarian hormones. Our ovaries produce just the right hormones at just the right time ("on demand" if you will) to keep us healthy. Every single cell in the body needs ovarian hormones. This became obvious to me shortly post-op. Despite taking estrogen, my hair fell out at an alarming rate and the texture became very fine and a section turned gray. My skin collagen evaporated overnight causing hollows beneath my eyes, and a long, narrow face versus the rounded, youthful face I'd previously had. My chin and mouth area became very saggy and veinous. Veins formed on my forehead and became more prominent elsewhere on my body. My vision became blurry. Basically, I aged on the outside about 15 years.

8) Last but not least - I wish I'd modified the surgical consent form to not allow removal of any organs unless the frozen section showed CANCER. I would have had the surgeon initial my write-in's. And I would have made a copy for my records.

Sorry for the novel but I hope this helps you!

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