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In need of support from women who understand...
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03-14-2005, 04:03 PM
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Guest
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Posts: 3
Hysterectomy:
Ovaries: Undecided
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In need of support from women who understand...
I am almost 36 and have had 5 unsuccessful pregnancies and am ready to be out of pain. I had painful periods as a teenager (missed 1-2 days of school each month because I was vomiting and in so much pain) and figure that was normal. Then I was on birth control for many years & went off to try to get pregnant. PMS pain was relatively normal (not severe) for a while.
My Dr. did a lap in 2001 and found a small amount of endo and removed a fallopian tube that was swollen and twisted. At the time, I was having mid cycle and PMS pain at about a 4 (out of 10), but it didn't disrupt my life. Last Nov, the pain started worsening to the point that I was having ovulation pain for about a week and PMS for 7-10 days prior to my period. Luckily, it was during Thanksgiving break and then, December was during winter break - I slept 1-2 days straight so I could sleep off the severe pain. I missed 5.5 days of work in January and was in major pain for 13 days for ovulation and 19 days prior to, during and after my period. In Feb, I had no ovulation pain, but period pain for 15 days. Each of these months I also have episodes of loss of appetite and vomiting for a few days.
I have told my Dr I am ready to have a hysterectomy because the pain is so bad I just want to be able to live my life again. Unfortunately, I am with an HMO that refuses to do more than another lap until I try BCPs for 3 months. I am adverse to taking them, but am willing to try it for 3 months because the Dr said they are likely to approve the surgery at that point. I start the BCPs after my next cycle but I am in extreme pain now. She prescribed vicodin and it lowers the pain level from 7 to about a 4, but it doesn't go away. And pain surges are up to 7 with vicodin and up to 8 or 9 without. This is horrible!!!
I'm a teacher and all I want to do is cry and sleep to not feel the pain, but I have to work each day & I know my job performance is suffering because I am nauseated and in pain. I desperately need some encouraging words because it feels like it's never going to end - even though I know it will.
Has anyone else done the birth control pill thing to help endo? What results did you have?
Also, has anyone had endo removed with lasers or with a laproscopy? I've heard it comes back (since when you have a cycle, it happens again) and the likelihood of more surgeries is almost inevitable. I've talked to 3 of my wo-workers who have had between 3 and 5 surgeries each to remove endo tissue over & over again.
Any encouraging words are welcome.
Thanks you,
Sheryl
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03-15-2005, 09:18 AM
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Guest
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Posts: 6,807
Hysterectomy: January 4th, 2000
Surgery Type: TAH
Ovaries: Kept 1 or both
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In need of support from women who understand...
Hi ((lovmymiata)),
I am so sorry to hear of all your suffering Endo can be such a nasty disease...
Unfortunately, one without a cure A Hyst doesnt always alleviate the Endo...there are many here that have underwent one only to be left with chronic pain & symptoms from recurring Endo. After this surgery, it becomes even more difficult for implants to be seen & removed.
There are also woman here who have gained incredible relief from it. Many times Drs will remove the organs, leaving the implants behind. They with-hold HRT in hopes of it dying off. Some studies are showing Endo can create its own Estrogen supply though.
Also, it is rare for Endo to grow on these organs, it is mainly seen on the sidewalls & cul-de-sac.
Excision of Endo seems to hold the best success. I'd seek out a Specialist though..they are more knowledgeable in spotting implants & posses a more precise skill in surgery.
Here is a link with some good info concerning a Hyst for this disease:
Myth: Hysterectomy Cures Endometriosis:
https://www.hystersisters.com/vb2/lin...=jump&lid=1658
There is also several articles with additional info on Endo in our Resources directory, here is the link:
https://www.hystersisters.com/vb2/lin...n=browse&cid=6
I'm sure others will come along shotly & share some further info/advice with you
Good Luck with everything Please keep us posted on your progress..my thoughts & prayers will be with u that you can find some relief soon...((hugs))
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03-15-2005, 10:51 AM
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Guest
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In need of support from women who understand...
About the birth control pills.
I am affraid I cannot give an exact answer because while I have suspected endo, I have never been diagnosed by a Doc.
I have taken birth control pills and they did help for a long time then they stopped working.
If you don't smoke, probably worth a shot.
Also speaking of shots, there's a birth control shot.
This shot causes some nasty problems in it self ( I looked into it because it was suggested to me by my last Doc so you'll have to weight what is worse)
I would look into that laser treatment (forgot what's it called) before trying to get a hysterectomy. The lining of the uterus is removed, no more periods ever. While I'm being really vague here ( Because I have been feeling much better my research into that area has stopped), I've spoken with people in the past who had it done with great results...Of course you will also be infertile.
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03-15-2005, 04:00 PM
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Guest
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Posts: 3
Hysterectomy:
Ovaries: Undecided
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thank you !!
I didn't realize that there are studies which indicate the endo makes it's own estrogen - that it awful! Bad bad endo!
I was supposed to do the laser thing but toldthe dr I didn't want it to ever come back so I wanted to the hyst and remove the ovaries. Now I will be reconsidering. Ugh - I waffled back and forth for days before deciding -- now I will be back into my research...lol. Just when you think you've figured it all out...hehehe
I do smoke, so I am a bit concerned about the BCPs - I will call the Dr before starting them.
Sheryl
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03-16-2005, 06:00 AM
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Guest
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Posts: 2,054
Hysterectomy: February 19th, 2002
Surgery Type: TAH
Ovaries: Removed both
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In need of support from women who understand...
Hi lovmymiata
I am sorry you are having to deal with the pain of endo
I had my hysterectomy for endo so I do understand how this can affect your daily quality of life.
I do not know if there is a right or wrong answer to the best treatment option for a woman with endo. It really depends on each individual case. For me the hysterectomy was the right choice. For some women it has not brought relief of their endo
I have not tried BCP's to control the endo but I did have a laproscopy to try and remove the endo and by that time it had already done a considerable amount of damage to my bladder. The doctor said that it was only a matter of time before it punctured through the bladder and I would end up with a catheter the rest of my life.
Endo can be found in many places of the body and can really do damage to other organs. That is why it is best to do whatever possible to keep the endo under control.
Where endo can be found
I have read many articles that will explain the only way to cure a woman of endo is to have ALL the endo removed. Women that have had a hysterectomy with the removal of their ovaries could still end up having trouble if ALL the endo is not removed.
I also think it is a good idea to get a second opinion from an endometriosis specialist. They are specialized in the best treatment option available.
Best Wishes and I'm sending many
's
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