Oophorectomy

katwalk · 08-20-2008, 09:30 PM

Does anyone here know a doctor I can see that will preform a Oophorectomy in the Boston area?
I want them out now. I have no desire to suffer through this anymore. They won't give me any decent pain pills. The birth control pills no longer are working at all. It effects my life far to much and I would rather not lose my job from having to run to the bathroom all the time from the cysts going off.
I don't want kids, I really don't. I decided I would rather adopt if I ever wanted kids BEFORE I was diagnosed, and have yet to find one single reason to combat my very long list of reasons not to have children that is topped off with PSOS being one of MANY medical conditions I have and I would never EVER want to risk inflicting them on a child and forcing them to suffer too. It would IMO be extraordinarily selfish for me to reproduce with the chance of passing on the pain I experience. I believe that Foster care/adoption would be a wonderful more rewarding option for me if I later desire to have children.
Because I am 19, no one will believe that I would rather not have children than suffer constantly. I really just want this issue resolved so I can enjoy my life and not have to be held down by pain.

dinitiam · 08-20-2008, 09:52 PM

I completly agree! I will be 30 in October, no kids and my GYN wont even talk to me about it! I know there is an age difference, but I also agree with the "passing it along" thinking. My mom cried for two hours when she found out that she was the one who passed it along to me.
Sigh...Keep looking.
Do you happen to go to any sort of counseling? It might be helpful to your/a GYN that you have gotten counseling and that its not just a spur of the moment thing.
I think its easier to buy a gun!!!

I know they think they have our best interests at hand, but they have to listen also.
DMM

katwalk · 08-20-2008, 09:59 PM

Quote:

Originally Posted by dinitiam

I completly agree! I will be 30 in October, no kids and my GYN wont even talk to me about it! I know there is an age difference, but I also agree with the "passing it along" thinking. My mom cried for two hours when she found out that she was the one who passed it along to me.
Sigh...Keep looking.
Do you happen to go to any sort of counseling? It might be helpful to your/a GYN that you have gotten counseling and that its not just a spur of the moment thing.
I think its easier to buy a gun!!!

I know they think they have our best interests at hand, but they have to listen also.
DMM

If ovaries were on the outside like testicles I would have chopped them off by now D:<
This isn't even the worst of my issues, I have a mystery issue where my lungs collapse. GOD FORBID a kid got that from me and you know, tried to PLAY ore something. Without rescue inhalers (as in none work for me) they might die!
I've been asking since I got diagnosed so I'd assume they figure I am serious.

justagirlgirlgirl · 08-20-2008, 10:04 PM

I think that a big area of concern that many doctors have with ovary removal is the impact on your hormones. If your body is forced into menopause at the age of 19, there could be issues with cardiovascular disease, long-term survival rates, bone density problems, etc.

My SIL had one ovary removed due to a pre-cancerous cyst. Her other ovary has a cyst also, but instead of removing both, the doctors agreed that it would be best to keep that one as long as possible and monitor the cyst for change. They told my SIL (who wanted both removed due to pain and cancer risk) that the long-term risks of removing both ovaries wasn't worth it at her age, and she was in her early 30's.

Sorry you're suffering so much - it is unfortunate that they haven't found a way to make it more manageable for you! (hugs)

katwalk · 08-20-2008, 10:14 PM

Quote:

Originally Posted by justagirlgirlgirl

I think that a big area of concern that many doctors have with ovary removal is the impact on your hormones. If your body is forced into menopause at the age of 19, there could be issues with cardiovascular disease, long-term survival rates, bone density problems, etc.

My SIL had one ovary removed due to a pre-cancerous cyst. Her other ovary has a cyst also, but instead of removing both, the doctors agreed that it would be best to keep that one as long as possible and monitor the cyst for change. They told my SIL (who wanted both removed due to pain and cancer risk) that the long-term risks of removing both ovaries wasn't worth it at her age, and she was in her early 30's.

Sorry you're suffering so much - it is unfortunate that they haven't found a way to make it more manageable for you! (hugs)

The way I look at it, right now with the other things wrong with me I have the body of a 60 year old. in 30 years? If my body keeps going at this speed I'll either be all artificial parts or dead. My joints are so bad by the time I have to worry about bone density mine will probably be fake or I'd already be in a wheel chair. Really the long term survival rates being low looks like a pro to me. I'll only be missing hospital beds.

Stacie M · 08-20-2008, 10:25 PM

I think the reason most doctors won't perform oophorectomies on PCOS patients is that it doesn't fix much other than pain associated with cysts. Since PCOS is an endocrine disorder you will still suffer from it after surgery.

To the original poster, have you worked with an endocrinologist or just a GYN? If you haven't met with an endo, I would recommend it! They are generally way better at treating PCOS and getting the symptoms controlled, at least that as been my experience. GYN's are nice, but most I found were only concerned with giving you BCP's and doing Pap smears. Anything outside of "normal" and they didn't do much for me.

katwalk · 08-20-2008, 11:03 PM

Quote:

Originally Posted by Stacie M

I think the reason most doctors won't perform oophorectomies on PCOS patients is that it doesn't fix much other than pain associated with cysts. Since PCOS is an endocrine disorder you will still suffer from it after surgery.

To the original poster, have you worked with an endocrinologist or just a GYN? If you haven't met with an endo, I would recommend it! They are generally way better at treating PCOS and getting the symptoms controlled, at least that as been my experience. GYN's are nice, but most I found were only concerned with giving you BCP's and doing Pap smears. Anything outside of "normal" and they didn't do much for me.

Oh no I'm screwed then D:
None of the hormone pills work anymore

DOOOOOMMMMED
I AM DOOOOOOOOMED
Ok new plan
How can I put my brain into a car. I think it would be fun to be a car.

Stacie M · 08-20-2008, 11:14 PM

Quote:

Originally Posted by katwalk

Oh no I'm screwed then D:
None of the hormone pills work anymore

DOOOOOMMMMED
I AM DOOOOOOOOMED
Ok new plan
How can I put my brain into a car. I think it would be fun to be a car.

Have you tried metformin or some of the other non-hormonal meds?

katwalk · 08-20-2008, 11:19 PM

Quote:

Originally Posted by Stacie M

Have you tried metformin or some of the other non-hormonal meds?

from what i understand those are more effective if you're overweight and any of my overweightness is entirely due to sitting on my butt eating pasta :/

TheGigglingFrog · 08-20-2008, 11:44 PM

When I was 19 and suffering from horrible pain due to endometriosis, I begged the Dr to rip out my humungo ovaries while he was in there cleaning up the endo... he said he wouldn't remove them but would try ovarian drilling. I freaked out at the idea of my ovaries being drilled, which lead me to understand that ripping the girls out would be far more drastic and if I wouldn't let him drill, why would I let him take away the hormone factories... all that internal dialogue let me know I was making an emotional request that had more to do with my identity as a woman and finally being out of my parents home and trying to find my way... fast forward 15 years and I am sooooo happy I kept my ovaries! Yes, I have had discomfort and misery and... but that all would have happened if I gave my ovaries up too!

Okay, so that was a lot of rambling that didn't answer your question about a Doc in your area... but I'm all the way across the country and can't help ya' there...

I guess my point is, this is a reallly drastic action that will have long term consequences. Please make sure you have exhausted all your other options before you take this step. Your ovaries are not the source of PCOS, it is an unfortunate mislabel of an endocrine disorder... think about it, having ovarian cysts is not a requirement for Dx, therefore, the ovaries are not the source, but an end result of other wacky happenings in your body, that won't go away with your ovaries disappearance.

In no way do I want to disrespect your age, at 19 you are just beginning down the long long long path of being a woman for the next 70 years... having stood in your shoes, at the same age, looking down the same path to having my ovaries removed, I am so glad that I turned and took a different route. In the end, it is your body and you have the right to do whatever you want to your blessed vessel, I just wanted to share my experience. For me, wanting my ovaries removed was a way to punish my body for betraying me... I'm glad I was kinder to myself instead.

Whatever you decide to do, make sure you research, research, research, and DEMAND excellent medical treatment. If you don't get it, go elsewhere till you find the support and are heard.

katwalk · 08-21-2008, 12:08 AM

Quote:

Originally Posted by TheGigglingFrog

When I was 19 and suffering from horrible pain due to endometriosis, I begged the Dr to rip out my humungo ovaries while he was in there cleaning up the endo... he said he wouldn't remove them but would try ovarian drilling. I freaked out at the idea of my ovaries being drilled, which lead me to understand that ripping the girls out would be far more drastic and if I wouldn't let him drill, why would I let him take away the hormone factories... all that internal dialogue let me know I was making an emotional request that had more to do with my identity as a woman and finally being out of my parents home and trying to find my way... fast forward 15 years and I am sooooo happy I kept my ovaries! Yes, I have had discomfort and misery and... but that all would have happened if I gave my ovaries up too!

Okay, so that was a lot of rambling that didn't answer your question about a Doc in your area... but I'm all the way across the country and can't help ya' there...

I guess my point is, this is a reallly drastic action that will have long term consequences. Please make sure you have exhausted all your other options before you take this step. Your ovaries are not the source of PCOS, it is an unfortunate mislabel of an endocrine disorder... think about it, having ovarian cysts is not a requirement for Dx, therefore, the ovaries are not the source, but an end result of other wacky happenings in your body, that won't go away with your ovaries disappearance.

In no way do I want to disrespect your age, at 19 you are just beginning down the long long long path of being a woman for the next 70 years... having stood in your shoes, at the same age, looking down the same path to having my ovaries removed, I am so glad that I turned and took a different route. In the end, it is your body and you have the right to do whatever you want to your blessed vessel, I just wanted to share my experience. For me, wanting my ovaries removed was a way to punish my body for betraying me... I'm glad I was kinder to myself instead.

Whatever you decide to do, make sure you research, research, research, and DEMAND excellent medical treatment. If you don't get it, go elsewhere till you find the support and are heard.

I had not until now know of ovarian drilling and it pisses me off that after asking so many questions ti hadn't been mentioned to me before. I'll definaty look into that

Stacie M · 08-21-2008, 01:05 AM

Quote:

Originally Posted by katwalk

from what i understand those are more effective if you're overweight and any of my overweightness is entirely due to sitting on my butt eating pasta :/

I believe there are a lot of "thin" cysters who have had good success with metformin. The belief is that on some level, PCOS is related to your body not processing it's insulin correctly, whether lab work shows this or not. Just as thin people can have type II diabetes and still benefit from meds, so can thin cysters.

I would definitely say give it a shot! It is cheap and easy to use, and if you don't like it or it doesn't work for you, you can simply stop taking it.

Also, I really recommend seeking another doctor. It sounds as if your doctors haven't given you a lot of info AND that they aren't offering you treatments aside from BCP's. Have you had a laparoscopy to make sure you don't have a painful condition such as endometriosis?

Good luck! Please keep us updated on what you decide to pursue!

dinitiam · 08-21-2008, 03:31 AM

Quote:

Originally Posted by TheGigglingFrog

When I was 19 and suffering from horrible pain due to endometriosis, I begged the Dr to rip out my humungo ovaries while he was in there cleaning up the endo... he said he wouldn't remove them but would try ovarian drilling. I freaked out at the idea of my ovaries being drilled,

Did you have the drilling done? If so can you please tell us about it?

Thx,
DMM

dinitiam · 08-21-2008, 03:33 AM

Quote:

Originally Posted by Stacie M

I would definitely say give it a shot! It is cheap and easy to use, and if you don't like it or it doesn't work for you, you can simply stop taking it.

Completely correct... very cheap! ive never paid my full premium ($10.00) for my 30 day @ 4 pills a day perscription.

TheGigglingFrog · 08-21-2008, 03:54 AM

Quote:

Originally Posted by dinitiam

Did you have the drilling done? If so can you please tell us about it?

Thx,
DMM

I didn't have the drilling done... for some reason the thought of that just grates me the wrong way. I have researched it and from what I can tell it isn't used much any more. It can provide temporary relief (hormone levels change a few days after surgery) but in the long run it hasn't shown to be any better than just leaving the girls as they are and treating the imbalances other ways.

Also, it is important to remember that OB/GYN's are trained as surgeons. Their trained solution many times is to put you under and physically adjust your body to what they think is correct. Lots of times this is of great benefit, but it is surgery and it has lots of risks. I think our culture is so use to the idea of surgery from all the plastic surgery we hear about and how casually surgeons talk about it. We want a quick fix to our discomfort in the time it takes to microwave a frozen meal, but often times healing takes quite a while and our cultural impatience gets in the way of taking the time to nurture our bodies. Personally I was grateful for the relief from my endo pain, but I took a loooooong time to recover, longer than what *they* say is normal. I have bad reactions to anesthesia and go into a major depression for months after.

Well, there I go rambling again... sorry gals!