Hysterectomy: On the fence about doing it. (bleeding, surgery, diabetic)

[melaniej65]

I am so happy to have had my total hysterectomy! I was in severe pain for years (I had a history of ovarian cysts since I was 11) and by the time I had the surgery I had several uterine cysts (the largest was 27 cm). I had it done when I was 45 and have had no severe issues (still have hot flashes - but oh so worth it).

When I came out of Anesthesia my surgeon was there and he actually apologized to me for making me wait so long for the surgery.

He said that I had so many adhesions (long history of abdominal surgeries) that it took forever to complete the surgery because everything was sticking together.

Of course you should take your time and decide what is right for you, but I will say that I wish I had it done years earlier.

[hothulamaui]

Hope get a SECOND OPINION. even if the second doc suggests the same thing as the first. ii is best to go for a second opinion. I did not an ended up w/a total hysterectomy and I didn't need it at all. not saying you might not need something, but a second opinion will verify, give you more information and make you feel more confident in your decision.

the recovery could take a while longer because you are older. my last surgery a few years ago was major. they estimated a 6 to 8 week recovery time, I was 60 and the recovery was 5.5 months. while I don't think you would take that long I would expect recovery to take at least 2.5 months. take it slow and don't put any time limits on yourself

wish you didn't have to worry about this. what ever you decide I wish you the best and that it can make you pain free

[lexingtongal]

See if there is anyone nearby that performs the daVinci robotic hysterectomy. Significantly shorter recovery time. Google daVinci robotic surgery, their site has a list of qualified surgeons. It will be worth traveling a bit
for the benefits vs an open procedure. Our hospital has a goal of decreasing open hysterectomies to less than 10%.

[suzy_q2010]

I've heard many women say they only wish their hysterectomy had been done sooner. One who totally regretted it had never had children, and the surgery removed any possibility she would ever be able to do so. That was before the advent of the assisted fertility procedures available now.

There does not seem to be much advantage of the daVinci procedure over a laparoscopic hysterectomy. Unless the operator is extremely experienced, the daVinci may take longer. The addition of the technology makes it more expensive, too.

Total laparoscopic hysterectomy versus da Vinci robotic hysterectomy: is using the robot beneficial?

Hopes, I think you need clarification on the indication for any surgery. I cannot imagine letting someone go six months with a suspicion of ovarian cancer without a definitive diagnosis being made. What did the person who read the ultrasound actually see?

So the question is what was the reason for the ultrasound in which the report raised the ovarian cancer question. If it was done for pain and you are still having pain, then a diagnostic laparoscopy might help determine the cause of the pain.

The doctor doing the laparoscopy could then continue with whatever surgery could be expected to help with any pathology identified. That might or might not include removing the uterus and either or both ovaries.

I suspect that the issue is previous scarring and the concern for creating more scar tissue. You do need to know that not all scar tissue causes pain. It can be extensive and the patient have no pain, or it can be relatively localized and cause a lot of pain, especially if the ovary is involved. Scarring between the uterus and bladder does increase the risk of injury to the bladder if the uterus is removed.

It would seem to me that your oncologist really does not think you have ovarian cancer. If s/he did, you would have had surgery months ago.

If you are having pain (and how do you know you do not have endometriosis?), the best option is to choose a surgeon whose skill and judgment you trust take a look and do whatever else would best help the pain. The best person to do that might be someone who deals with extensive adhesions on a regular basis, and that could be someone who specializes in the treatment of endometriosis.

Scarring can certainly cause problems with nerves, but sometimes removing the scar tissue and freeing up the nerve can help.

Also, although "minimally invasive" surgery is the goal these days, there is still a place for an open procedure when it is safer for the patient. If it happens that a big incision is needed, it should not be looked upon as a failure of some kind.

I had surgery for a small bowel obstruction in 2010, which happened due to a single adhesion from an appendectomy when my left ovary was removed for endometriosis in 1971. The original surgery was done through an incision similar to a Cesarean. I have also had my gallbladder removed laparoscopically. The surgery for the obstruction was done through a large incision. So I have personal experience to compare types of incisions. The gallbaldder was easiest. Thumbs up for laparoscopy. The ovarian surgery was the worst, but that was back when the pain medication was a shot of narcotic. The last surgery was not much worse than the laparoscopy, because pain management after surgery has come a long way. My surgeon used a device that injects a small amount of anesthetic into the incision. That made an amazing difference in the pain for the first few days after surgery.

The goal is to make you feel better, and I hope that happens soos.

[Hopes]

Originally Posted by suzy_q2010

Hopes, I think you need clarification on the indication for any surgery. I cannot imagine letting someone go six months with a suspicion of ovarian cancer without a definitive diagnosis being made.

There was a three month delay due to lack of health insurance. The hospital wouldn't allow me to have tests performed without paying in full in advance. I qualified for an insurance that covered pre-existing conditions 3 months later.

Originally Posted by suzy_q2010

What did the person who read the ultrasound actually see?

The report read "possibly a ruptured cyst. Can not rule out ovarian cancer."

Originally Posted by suzy_q2010

So the question is what was the reason for the ultrasound in which the report raised the ovarian cancer question.

I went for a normal annual gyne exam. She said my uterus felt enlarged. I didn't think it was a big deal. I paid out of pocket for the ultrasound because I was excited that I might finally have the answer for all of the problems I had been having with abdominal pain and other symptoms Then I got the results. It turns out my uterus is enlarged but not overly so. Every single doctor can feel a mass in my abdomen. It's an ovarian cyst. It came up normal in the MRI, but they're not ready to rule out ovarian cancer. I think the reason is that it's so hard to detect the earliest stages. I think the other part of the reason is they need to legally make sure I don't have it because I have an ultrasound that says I do. If they just brush it off after the MRI and I later end up having a later state of ovarian cancer, I guess they think they'll be legally liable if they don't pursue this to definitively determine there is no cancer.

Originally Posted by suzy_q2010

If it was done for pain and you are still having pain, then a diagnostic laparoscopy might help determine the cause of the pain.

Yes. I have pain. I've had pain my entire life. This pain is different. The right side of my abdomen is literally tender to the touch. Even a light touch hurts. But this laparoscopic doctor thinks that pain is probably nerve pain due to my many abdominal surgeries. The other problem I have is pressure in the center, that pushes against my bladder and bowels, which might be due to the way my uterus is positioned and attached to my bladder. So, my most severe pain might not be resolved by the surgery, but some of my discomfort and other symptoms might be resolved.

Originally Posted by suzy_q2010

The doctor doing the laparoscopy could then continue with whatever surgery could be expected to help with any pathology identified. That might or might not include removing the uterus and either or both ovaries.

I suspect that the issue is previous scarring and the concern for creating more scar tissue. You do need to know that not all scar tissue causes pain. It can be extensive and the patient have no pain, or it can be relatively localized and cause a lot of pain, especially if the ovary is involved.

That's good to know. I'd like my right ovary out more than anything else. That's where my pain is. That's where most of my scar tissue is too. I had my appendix out in 8th grade. When I was 19, I had an ovarian wedge resection on the right ovary. In my mid-twenties, I had an ectopic pregnancy and my right tube was taken out. A year later, I had a C-section. So I have intersecting scars on the right side. The appendix scar was vertical, the other surgeries were cut in the same place, just above my pubic hair. I think my ovary is a scared up mess from the wedge resection. When I was in my 20s, I used to have period pain on my right side that would cause me to curl up in a ball, I couldn't straighten my right leg. (I don't have endometriosis, that is certain.) After my pregnancy, I never had that severe of pain. My theory is that the pregnancy broke or stretched some adhesions. After that, I've always had period pain, but not as severe. Now I have pain ALL THE TIME. It hurts right now. And sometimes it gets so sore and painful. It messes with my bowels. It messes with my bladder. I'm just tired of it all. I've lived my entire life in pain, but now I have pain that never goes away and gets worse at times.

Originally Posted by suzy_q2010

Scarring between the uterus and bladder does increase the risk of injury to the bladder if the uterus is removed.

It's good to know my instincts were accurate. This guy is good though, the best our city has to offer.

Originally Posted by suzy_q2010

It would seem to me that your oncologist really does not think you have ovarian cancer. If s/he did, you would have had surgery months ago.

I agree to an extent. But he was all gun ho and intense about how important it was to move quickly. Then his tune changed when he found out that I didn't have health insurance. Now that I have health insurance, he is referring me to this dude for surgery. I think he is just doing what he can to ensure he catches the earliest stages of ovarian cancer for malpractice reasons since the earliest stages are very hard to diagnose. But I really need to call him to find out if he officially ruled out ovarian cancer and just referred me to the guy to help me find out what is causing me so much pain. That might be all this is.

Originally Posted by suzy_q2010

If you are having pain (and how do you know you do not have endometriosis?),

The MRI is very clear on that. This laparoscopic surgeon showed me the MRI and how it's clear I don't have it. I didn't bring it up. It came up because I asked if the surgery would end my pain if we left my ovaries. He first said it wouldn't end my pain if I had endometriosis. Then he opened my MRI for a close look and was able to say I don't have it. He showed me where it would show up. He said the test I got is the best one for diagnosing it. Plus, my sister died having a hysterectomy for endometriosis that the coroner later proved she didn't even have. As a result, I'm going to believe this doctor's interpretation of the MRI.

Originally Posted by suzy_q2010

the best option is to choose a surgeon whose skill and judgment you trust take a look and do whatever else would best help the pain. The best person to do that might be someone who deals with extensive adhesions on a regular basis, and that could be someone who specializes in the treatment of endometriosis.

That's why the oncologist referred me to this guy. He is the best laparoscopic surgeon in my city for adhesions. It's his special talent. If I mentioned his position, everyone here would be able to quickly identify who he is without me naming names. I do trust him for doing the best laparoscopic surgery possible on me. I'm just put off by his offering to take out my uterus without what it seems to be any reason whatsoever.

Originally Posted by suzy_q2010

Scarring can certainly cause problems with nerves, but sometimes removing the scar tissue and freeing up the nerve can help.

See! That's good to know! I just wish I could talk this guy into taking my right ovary out and clean up all of the adhesions while he's at it.

Originally Posted by suzy_q2010

Also, although "minimally invasive" surgery is the goal these days, there is still a place for an open procedure when it is safer for the patient. If it happens that a big incision is needed, it should not be looked upon as a failure of some kind.

I know. Every doctor has tried to do laparoscopic and ended up cutting me open. I don't care as long as it is a low horizontal incision. I'd be really mad if he cut me vertically though.

Originally Posted by suzy_q2010

I had surgery for a small bowel obstruction in 2010, which happened due to a single adhesion from an appendectomy when my left ovary was removed for endometriosis in 1971. The original surgery was done through an incision similar to a Cesarean. I have also had my gallbladder removed laparoscopically. The surgery for the obstruction was done through a large incision. So I have personal experience to compare types of incisions. The gallbaldder was easiest. Thumbs up for laparoscopy. The ovarian surgery was the worst, but that was back when the pain medication was a shot of narcotic. The last surgery was not much worse than the laparoscopy, because pain management after surgery has come a long way. My surgeon used a device that injects a small amount of anesthetic into the incision. That made an amazing difference in the pain for the first few days after surgery.

I've been having problems with bowel obstructions for the past 12 months.



I have a question for you since you seem to know a bit about medicine. This surgeon I saw said that if the surgery didn't help with my pain, it might be nerve pain due to all of my other surgeries, and that a medication for nerve pain might help. So I asked him if I could try it now. He prescribed Neurontin. I haven't started taking it yet. I'm a little afraid of the side effects. Anyways, my question is this. If it works, does that mean I have nerve pain? Or is it possible it would resolve other pain and hide important symptoms?

[Hopes]

I want to thank everyone who posted. I responded to Suzy because she had specific questions.

I have time to figure this out. When the scheduling office called, the first surgery appointment available wasn't until the end of February. I asked if I could call her back after coordinating with my husband's schedule---just to stall. It's good to know that his schedule is so backed up. I have time to finish all of my other appointments first. I'm having a cystoscopy and a colonoscopy next month. I think it's best to get to the bottom of exactly what is really wrong with me prior to jumping into any surgery. It will give me time to talk to the oncologist for clarification too.

I've got this Cadillac health insurance with a deductible that's going to be paid early in the year, so I'm going to take advantage of this opportunity to truly push for a resolution on my pain. I've complained for years about my pain and doctors' eyes just gloss over. My regular gyne (who I have fired) always just gave me friggin tests for STDs, even though I've been happily married for 20 years. My regular doctor sends me for a normal x-ray and then brushes it off since I don't have arthritis in my right hip. I'm tired of this pain because it's getting worse and worse.

[KathrynAragon]

Originally Posted by Hopes

I want to thank everyone who posted. I responded to Suzy because she had specific questions.

I have time to figure this out. When the scheduling office called, the first surgery appointment available wasn't until the end of February. I asked if I could call her back after coordinating with my husband's schedule---just to stall. It's good to know that his schedule is so backed up. I have time to finish all of my other appointments first. I'm having a cystoscopy and a colonoscopy next month. I think it's best to get to the bottom of exactly what is really wrong with me prior to jumping into any surgery. It will give me time to talk to the oncologist for clarification too.

I've got this Cadillac health insurance with a deductible that's going to be paid early in the year, so I'm going to take advantage of this opportunity to truly push for a resolution on my pain. I've complained for years about my pain and doctors' eyes just gloss over. My regular gyne (who I have fired) always just gave me friggin tests for STDs, even though I've been happily married for 20 years. My regular doctor sends me for a normal x-ray and then brushes it off since I don't have arthritis in my right hip. I'm tired of this pain because it's getting worse and worse.

I really feel for you.

Since I was 13, nearly every month that I ovulated, regardless of which side, my ovaries created a large, fluid filled cyst that created a burning pain in the affected side. This pain built up for about three or four days and then I could literally feel when the cyst burst because whatever fluid was in those cysts created a widespread burning sensation - and then gradual relief.

Till my period came on. Then my retroverted, cramping uterus would irritate my large intestine that it was laying on, and I'd have diarrhea and debilitating cramps for about two days.

Thank goodness I didn't have PMS or I think I would have gone crazy!

When I entered perimenopause in my late 30s, I started bleeding all the time. I am serious - I tracked this. I would bleed for 18 out of about 22 days - and my periods got down to every 16 days or so - which also meant that I had that lovely ovulating pain twice as often as well. And talk about torrential periods - OMG. That's when we really knew something was amiss - how could that much uterine tissue build up in just two weeks?

To add insult to injury, I began getting abnormal pap smears, which meant that I was back and forth every few months to have something else biopsied or snipped off or at least poked and prodded - while I was bleeding (which was all the time) anyway. It was so depressing!

Then the WEIGHT GAIN. That much of an overload of estrogen throughout your body creates weight gain. So now, I was bleeding all the time, in pain much of the time, worried about cervical cancer, and I had gained 25 pounds.

Then my doctor prescribed a "chemical DNC." What that means is that you take progesterone (I think) for 21 days and then just stop - and it's supposed to induce a heavy period that cleans out your uterus completely. OMG. Besides breaking out into about a brazillion zits in that 21 days, I gained 11 more pounds in 21 days! THEN THE FLOODS CAME. When it happened, it was instant and amazing. I was standing up in someone's office (thank goodness it was a woman's office) and suddenly, I felt this warm rush. By the time I got to the bathroom, my shoes were filling up with blood. Unbelievable. Oh well, I didn't want to be at work anyway, with 27 zits on my face and bursting out of all my clothes and feeling like the most unattractive, ill person on the planet.

Anyway, within two months, everything was back to abnormal. That's when they did some sort of vaginal ultrasound and realized that my engorged uterus had such an abnormal growth of tissue in it - and that tissue was probably what was causing some of my abnormal pap smears (not all of them - I had also had some precancerous lesions on my cervix to add to my joys).

So - family history of ovarian cancer, ovaries with cysts all over them, crazy uterus, misbehaving cervix - out it all came - THANK THE LORD.

Besides feeling instantly better - as in the very next day after surgery - within six months I had lost 30 pounds and within a year had lost 50. WOOOHOOOO, so much for that premise that women gain weight after a hysterectomy!

Twelve years later, I feel a thousand times better than I did at age 38 - and I look better too! Life is good and thank God for modern medicine.

[SouthernBelleInUtah]

I took Neurontin for several years. It was amazing! It is sedating so I started it at night. The script was for 2-300 mg pills but I never needed more than one. Take it tonight. I fell asleep at work the 1st day.

Sleepiness was the only side effect I had.

[Hopes]

Originally Posted by SouthernBelleInUtah

I took Neurontin for several years. It was amazing! It is sedating so I started it at night. The script was for 2-300 mg pills but I never needed more than one. Take it tonight. I fell asleep at work the 1st day.

Sleepiness was the only side effect I had.

It's good to know it's amazing. My prescription is 300mg @ 3 times a day. Did you eventually overcome the sleepiness after a few weeks?

[SouthernBelleInUtah]

After a few days. I was still drowsy but could fight it with a diet cola.