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Old 02-09-2013, 07:13 AM   #1
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Angry Going for total hysterectomy scared

Recently I had switched my OB/GYN. I used to go to a man OB/GYN who "cared" for me for almost 10 years but my recent visit to him made me have more questions than I could ask and I had dumbfounded look on my face when he left my room...

As soon as I had my child (almost 10 years ago) I had a c-section. After c-section was performed I'd developed horrible pain in my lower abdomen. The pain was so bad that I could not stand straight. When he did an ultrasound to find out wth was going on....he told me "You need a surgery". He said that my intestine was somehow attached/glued to one of my ovary...how the heck does this happen? I was too young and too stupid to investigate it further and believed every word my OB/GYN said. After this expensive surgery a few months later I had developed another excruciating pain only it was so bad that I was climbing walls in my bedroom, screaming and ripping off our bedding on bed. I honestly thought I was dying. My husband had called an ambulance and they brought me to hospital, again did an ultrasound to find out I had SEVERE infection in my uterus... the ER doctor said the infection possibly was caused by the surgery...

After 3-4 years after they treated me with antibiotics I had developed pain on my left side and was unable to have a normal lifestyle. Wasn't able to exercise, walk fast nor run because of the pain. Another trip to OB/GYN he does an ultrasound and says I have an ovarian cyst about 6 cm. So he suggest Laproscopy through my belly button.

He performs Laprascopy (I am sure I didn't spell it correctly) and then tells my family that he did NOT remove the cyst because I had very very bad scar tissue all around me so he just "poped it" to relive the pressure etc...again he was implying how difficult the surgery was and how bad my scarring tissue was that it was literally an impossible procedure.

Now 4+ years later I keep getting pain on same side. He performs another ultrasound and tells me my cyst is back to 5 cm in size. He also noticed that I have thick uterus 12 mm vs 4 mm what it supposed to be. His solution is to get some "mesh" they scoop out your uterus, insert some mesh, hook it up to low electricity for 90 sec and you are done. About my cyst he doesn't say anything but sends me home with a powerful pain reliever med.

I'd asked him what's the solution to my problem because my cyst kept growing every month and wasn't going away, I was having very bad cramps and super heavy bleeding every month and now he tells me my uterus is abnormally thick (he measured me at 12mm a few days after my period). So he tells me : "I'll do what my patient wants me to do".....ummm excuse me? - I thought to myself. Aren't you a medical professional here and YOU are the one who should tell me what's best for me and not what "I THINK" is good for me? Again, no definite answer and he sent me home with powerful pain med. Despite finding that my uterus is abnormally thick, he does NOT perform any vaginal tests but sends me home with pain meds.

That's when I thought enough is enough. I searched on an Internet for "TOP or BEST local OB/GYN doctor" and found a woman OB/GYN. Now I wanted nothing more but the best doctor since I am paying for it!

Surely enough I made the right choice. First I came to her for "second opinion" but in reality I was ready to switch. She listened to me carefully (not rushing out of door like my ex-doctor) and then she performed several vaginal tests including biopsy, pap smear and an ultrasound with advanced machine. 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.

Thanks

 
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Old 02-10-2013, 09:36 AM   #2
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Re: Going for total hysterectomy scared

Quote:
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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Old 02-12-2013, 04:42 PM   #3
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Re: Going for total hysterectomy scared

STLouisgal , thanks for such detailed reply. Could you please tell why did you have total hysterectomy done? What was your diagnosis? And how old are you?

I am so sorry that you had to go through such altering life changes. Would you rather be in pain from ovarian cyst and unable to exercise nor even walk fast?

Right now I am not even 40 years old and I lost my sex drive I don't know why... I feel tired all the time and I have insomnia and take over the counter pill meds to help me sleep. I am in between scared for surgery at the same time want it to get over with.

 
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Old 02-12-2013, 05:04 PM   #4
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Re: Going for total hysterectomy scared

I had a large ovarian cyst. All my organs were removed even though the cyst was benign. With all the surgeries you've had, you could have adhesions that are causing the pain. Ovarian cysts don't necessarily cause pain. But if they remove just the cysts and leave your ovaries and uterus, you would know if the pain was from the cysts. And you'd still have your organs that are essential to lifelong health - physical, mental, emotional, sexual.

I was almost 50 when I had my hysterectomy. Everything fell apart after that. And now I deal with chronic pelvic pain and back, hip, and rib cage pain.

 
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Old 03-15-2013, 08:13 AM   #5
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Re: Going for total hysterectomy scared

Quote:
Originally Posted by linka View Post
I, myself am scheduled to total hyst next month but for me it's unavoidable I have pre-cancerous condition and I've suffered from multiple GYN problems for 10 years now.
I mentioned in my first post that the first line treatment for endometrial hyperplasia is medication. Were you offered that? What type of hyperplasia do you have - simple, complex, with or without atypia? There's a lot of good info on the web about conservative treatment of hyperplasia which shows a high rate of regression (cure).

 
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Old 03-16-2013, 05:44 PM   #6
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Re: Going for total hysterectomy scared

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Originally Posted by STLouisgal View Post
I mentioned in my first post that the first line treatment for endometrial hyperplasia is medication. Were you offered that? What type of hyperplasia do you have - simple, complex, with or without atypia? There's a lot of good info on the web about conservative treatment of hyperplasia which shows a high rate of regression (cure).
Yes StLouisgal, I was offered the treatment first but my treatment was going to be D&C when they scoop the uterus out. My thickness was 12 mm last month vs 4 (think that's the size it should be) but this month it's 14 mm. Then I have an ovarian cyst on left ovary that now measures 7 cm in diameter and keeps on growing I have every day very bad left side abdominal pains and it radiates into my back and it's like pulling dull pain that shoots into my leg. The ultrasound done on uterus and ovaries has shown that left ovary is just now plain scary and has adjacent walls and white cells like in those sacks and it looks like it's spread all over my cyst as well as uterus. The doctor said "it looks ugly".

So why perform D&C if my left ovary has a cyst that keeps on growing and this is NOT the first time that cyst is growing. I already had a lap. surgery (done through belly button) by my first OB/GYN who who could not take out my cyst but he deflated it due to my sever scarring tissue I've developed after I had my c-section with my child. So after that lap. surgery the new cyst has grown and now it grows 1.5 cm every month and not stopping...

My right side now has a cyst of 5 cm and too keeps on growing but slow growing. I could go for D&C and for one ovary removal but I have also done my research online and most women and healthcare providers say that when one ovary is left, there's a lot of pressure on that ovary and about in 5 years it fails and requires another operation. It's like a bad tooth, you don't continue fixing it, when it's rotten to the core, it's time to take it out. I do get sometimes unexpected heavy bleedings and in November I bled for a MONTH! I am sick of my ER trips and constantly waking up in pain from my cysts plus now a doctor pointed out on my recent ultrasound several areas where she said it could be cancer....

Last edited by linka; 03-16-2013 at 05:45 PM.

 
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Old 03-17-2013, 08:11 AM   #7
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Re: Going for total hysterectomy scared

Quote:
Originally Posted by linka View Post
My thickness was 12 mm last month vs 4 (think that's the size it should be) but this month it's 14 mm. Then I have an ovarian cyst on left ovary that now measures 7 cm in diameter....So why perform D&C if my left ovary has a cyst that keeps on growing and this is NOT the first time that cyst is growing. I already had a lap. surgery (done through belly button) by my first OB/GYN who who could not take out my cyst but he deflated it due to my sever scarring tissue
If you understand the lifelong functions of the uterus, ovaries, and tubes - hormonal/endocrine, anatomical, skeletal, sexual - then you'd likely want to keep them if at all possible (absent cancer of course).

Hormonal medications are generally the first-line treatment for both your problems - don't know if those were ever offered/tried. I've read that MOST cysts can be removed and leave the ovary or enough of it to continue producing hormones. But you have to have a surgeon with those skills.

Quote:
Originally Posted by linka View Post
left ovary is just now plain scary and has adjacent walls and white cells like in those sacks and it looks like it's spread all over my cyst as well as uterus. The doctor said "it looks ugly".
ALMOST ALL ovarian cysts are benign so "ugly" doesn't tell you much. Have you seen the u/s report?

Quote:
Originally Posted by linka View Post
I could go for D&C and for one ovary removal but I have also done my research online and most women and healthcare providers say that when one ovary is left, there's a lot of pressure on that ovary and about in 5 years it fails and requires another operation.
You definitely want to keep BOTH ovaries if you can since they're part of the female "system" but I don't know why an ovary that has failed would need to be removed. Women who're in Premature Ovarian Failure (POF) don't generally need their ovaries removed. It does seem common for women who've had hysterectomies to develop ovarian cysts so maybe that's what you're referring to?

 
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Old 03-18-2013, 06:13 AM   #8
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Re: Going for total hysterectomy scared

StLouisgal,

I understand that you are set against total hysterectomies. Maybe your hysterectomy was performed by not very qualified doctor that now you are faced with pain and lower back pain even after the surgery.

Are you suggesting to deflate my left cyst again and just wait till new one grows? Go through unexpected bleeding again and wake up at nights and pace around room holding with my hand my stomach because the pain is moderate. Take oxycodin because this is the only drug that seems to take my pain away. Get possibly addicted to oxycodin too. Then get x number of visits to ER and pay for every visit $3000 just so they can tell me that my cycst had raptured or leaking.

My previous OB/GYN had done c-section and 2 surgeries on me. One surgery I don't even know what exactly he was doing because he never fully disclosed the information to me. The previous OB/GYN was like a family friend and after he'd performed a c-section, then I had severe uterus infection and I was told when a woman gets severe uterus infection it causes scar tissue. Then after my c-section somehow (don't ask me how) but my left ovary got "glued" to one of my intestines and they had to be separated because it was pulling my intestine and causing very bad pain and discomfort. We ended up paying for that surgery $14,000 and both my husband and I have very crappy health insurance. If one can even call it "insurance".

After all that that's when all my problems began with cysts. My left cyst has grown before and before it gotten to 5.5 cm. I had a surgery in 2005 but the OB/GYN told me the scar tissue is SO BAD that he was unable to remove my ovary and deflated it and that in his 25+ of being OB/GYN and a surgeon he's never seen a case like mine. I don't know why other women don't get it (at least people I know who had multiple c-sections and doing just fine).

Last time when I visited my previous OB/GYN and complained on pain in my lower back my OB/GYN had asked me "what science fiction books have you been reading" - I replied what it has nothing to do with my cyst - and she said "no". While others have told me it has a lot to do with your cyst. Then he saw that my cyst was already 5.5 cm and growing rapidly every month and he gave me pain meds and sent me on my way home. While he was performing an ultrasound every month on me (vaginal) every month I had to pay $488 for his visit with an ultrasound.

In 2009 I had a very bad virus (non ob/gyn) and I had spent 64 days in hospital and 48 days in ICU fighting for my life. After that life changing event in my life I was unable to work because I had to learn again how to walk and spent 3 months in rehab center learning walking at age of 35. Obviously getting back to work was out of question for me and we only have my husband with a full time job/our bread winner.

We have so many medical bills piling up, it's not even funny. The loan is now at $10,000 and you are suggesting me to not take my uterus out but seek alternative methods and then visit OB/GYN again and again for ultrasounds to monitor cysts and maybe then have another surgery to deflate it again and again. It was already deflated in 2005.

Yes, I was offered hormone therapy but it wasn't helping me. I was on birth control pill to control my cyst but the birth control pill also can cause a blood clot and with my other medical conditions/problems it wasn't a solution. I did take those for 4 months but it had no effect on my cyst what so ever. In fact it continued to grow no matter what.

Now that my ultrasounds showed many many cysts producing all around my uterus/ovaries and many of them have white like substance that the OB/GYN can't see if it's cancer or not and considering all my monthly sufferings and that we've decided not to have anymore children (simply because we can't afford them) I think it's time to get everything out and be pain/suffer free.

I wonder if your cycst for which you had your hysterectomy ever gave you that much problems? Have you had prior surgeries to deflate it? Have you had uncontrollable heavy bleeding for a month?

 
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Old 03-18-2013, 11:42 AM   #9
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Re: Going for total hysterectomy scared

Whoa - just trying to help! I'm in no way making light of your troubles.

One has to understand female (pelvic) anatomy to realize that the anatomical and skeletal changes are an absolute result of having the uterus removed, regardless of surgical techniques.

Only you can decide what's right for you after getting all pertinent information.

 
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