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Help and or Advice/or Suggestions?
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11-26-2003, 07:01 AM
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Guest
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Help and or Advice/or Suggestions?
Hello everyone.I haven't posted since I went to see my OB-GYn on october 22nd.well ever since I went to see him I have been thinking really hard about my options.I do have Pre-Cancerous Cells,which were never removed.infact none of my Endo was removed,and neither were the cysts on my ovaries.I had a cyst on my right ovary,which ruptured last year and sent me into the E.R. with severe pain.now I have a cyst on my left ovary which hasn't ruptured yet,but is giving me some trouble.anyway,I have thought long and hard about a hyst,and I want one done.I'd rather my doc do a hyst before I even develop any kind of cancer.I don't want to go through that.the thing is,I'm 21 years old.will be 22 on feb 19th,and I just want my life back.I'm in pain everyday throughout the year.I have been like this since I was 12 years old,and my body has had enough.the only thing is,my doc won't do a hyst on me.I can understand with me being young,but I feel it's my body and my decision,not his.I don't want to wait until I'm old to have a hyst cause then life would just pass me by,and I'd still be pain.I want this done before I hit 30..I would like to go out and enjoy myself,but I can't even do that.if I'm walking to long,I'll double over in severe pain.I can't/won't have kids.the reason being is I broke my back in 2 places,and I have a 50/50 chance that if I got preg,I'd either end up in a wheel chair,or die....I don't want to risk that either.I am sereiously looking into Adoption.please someone just help me?Thanks.
Val
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11-26-2003, 07:40 AM
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HysterSister
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Posts: 3,391
Hysterectomy: November 29th, 2001
Surgery Type: TAH
Ovaries: Removed both
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Help and or Advice/or Suggestions?
Hi Val,
Situations like yours are just so tragic, in my opinion. I hear you - it's terrible to be suffering so much at any age but to be 21 and missing out on so much would be awful.
I know that you are aware a hyst may not "cure" the endo forever. It's a risk we all take when we have endo - that even a hyst may not put an end to the endo monster.
There are gals who have hysts at your age, although many gyns do not want to do a hyst on women so young. But it is possible and if this is really what you want, please continue to seek out other docs. I'm assuming that you really don't want to just have your endo removed via a lap procedure, right?
You need to find a doc who will really work hard to help you battle this endo monster, whether that means a hyst or something else. There are docs out there who are experts in treating endo ... have you found one that you have confidence in? Gyn oncologists are particularly skilled surgeons - they are very adept at handling difficult endo cases. Have you ever consulted with a gyn oncolgist?
Please hang in there, Val. I know that you are miserable and just want some relief. Keep us posted on how you are doing and what you decide about treatment. Sending gentle hugs your way.
Beth
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11-26-2003, 06:16 PM
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Guest
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Help and or Advice/or Suggestions?
Beth,
Hi Hun.yeah I know a hyst isn't always a "cure"for Endo.unfortuneatly,the docs I have talked to here,are no help.all they wanna do is either push pills after pills in my systum,or shot after shot....which I am not going to do anymore.I've been on the depo Provera shot twice,it didn't work.it worked at first,but it didn't last very long.I've been on soooooooo many different kinds of BCP's,and those didn't help either.all the docs I talk to here,well they just waist my time and money.they all basically tell me they can't help me,or let's wait and see.I was thinking of calling my ob/gyn after the holidays,and going back in to talk to him some more.I meann sit there and talk to him.from what he told me,I do have scar tissue,and maybe some endo on my bladder and bowels.I can't spell.I'm just fed up with missing out on so much of my life.my mom had a hyst at 25 because of endo.anyway sorry so long.It is nice to have people to talk to about this..atleast you guys understand.thaks everyone and happy holidays
Wih much hugs and love
Val
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11-27-2003, 07:32 PM
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HysterSister
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Posts: 241
Hysterectomy: February 9th, 2004
Surgery Type: TAH
Ovaries: Kept 1 or both
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Help and or Advice/or Suggestions?
Hi Sweetie,
I don't have endo so I can't quite empathize, but I am young and I just convinced my second opinion doc to do a hyst on me. One more round of icky shots and I will be ready for the ER. I have something wrong with me that has caused me to bleed and I too have watched life continue around me while I sit at home with my own life on hold. It has almost come to a stop! I have done tons of hormones and I know that is not a good long-term solution. I know that pain is much more difficult to quantify for a doc. I can write down how much blood I lose and they can see it in my blood counts.
Since you are so young, I believe they will make you try a few more things before they will operate, but that will still get you in before you are 30. They may make you have the lap and they may make you try Lupron. Both are temporary of course, but the docs and insurance companies feel like they have to try everything they possibly can to save a young uterus.
I sat down and said, hey, I have tried it all and I want my life back. Anything else we will try will be the same and is risky for someone with my family history of diabetes, high blood pressure, migraines, and vision problems. I also don't want to increase my risk of cancer or osteoporosis by taking excessive hormones that don't even work all that well. My doc listened and heard my arguments about not wanting to give birth to my own children when there are so many that need loving homes. Turns out she is adopted and so is my regular doc. I thought it would be more difficult to convince her, but she went for it. If you do have a New Year's chat with your current doc, make sure you emphasize the fact that you do not want to risk your mobility or your life to give birth. Study up on your options and why you think the risk/benefit ratio is wrong for you. If you sound informed and convinced, you may be able to get what you want sooner.
There are a lot of other twenty-somethings and one teen over in the pre-op section. I'm sure the battle was up-hill for most of us.
Please keep us updated.
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