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age discrimination age discrimination

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Unread 06-15-2001, 04:27 AM
age discrimination

I was referred to you by a friend after barely surviving an hemmoragic ovarian cyst. I am 24 years old and 2 1/2 months ago, I was wheeled into the ER nearly dead due to a huge ovarian cyst that had bled almost all of my blood out of me. I had a D&C and laproscopy to drain 800ccs of blood out of it, after having a massive blood transfusion. I had complications from the surgery, and almost died again to apulmonary embolism. The gynecologist informed me that i had huge polycystic ovaries and it would be impossible for me to have children unless i used fertility drugs. After 9 days in CCU, and finally getting to go home, i bled from surgery for almost 2 weeks(i am on a blood thinner currently). Had a week off from bleeding, then have been bleeding heavily ever since, with about maybe 3 days of not bleeding in between.

There is a history of heavy heavy periods with my mother, she had a hysterectomy a few years ago to stop the problem. I am having the same problems she had, but mine are far more advanced. I know that pretty soon i will have to follow in her footsteps because it has affected my life so severely that i cant work. Between the neverending bleeding and the horrible cramps that have already sent me back to the ER (they gave me morphine and could still feel the cramps), i can barely leave the house. The doctors put me on the pill to help and i might as well not be taking them for all the help they have done. My OB/GYN changed my pill so i wouldnt have my period for 3 months told me i "might" spot. Well not only have i spotted, i am heavily bleeding non-stop.

My really big problem is that i am encountering problems with age discrimination when it comes to discussing the option of having a hysterectomy with any Gynecologist i see (i have been through 5 in this short time).No one will talk to me about it at all, when i bring it up, they just tell me i am too young to be thinking about it becuase i might want children later(mind you, i cant have kids anyway). I also hear them say that losing my ovaries at 24 is bad hormonally, since i will have to take a pill for the rest of my life. Now, currently i am taking a pil everyday for the rest of my life any way, so its a toss-up between the birth control pill to keep my ovaries small and cystless, OR hormone replacement.
I am so utterly depressed over this whole thing becuase it seems that no doctor is willing to help me out at all,and if it weren't for the support of my boyfriend, I would not be able to take this suffering at all.

I am wondering if there is any way to find a list of competent Gynecologists who will not discriminate against me and tell me that becuase i dont have children and im 24, that i dont have a right to decide what i need? I don't want to have to go through this anymore, especially since i know that nothing else will work. Any information at all would greatly help me. I don't want to live in constant fear that I am going to die from this anymore.
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Unread 06-17-2001, 07:02 PM
age discrimination

Your history sounds just like my mother's, but she had 2 children before her ovarian cyst ruptured. When she was in the hospital, she too almost died from bleeding internally. At this time she had already had 1/2 of the one ovary removed earlier. Anyway, her doc went out to the waitingroom and had my father sign a paper and they did a complete hyst then. I was little, and yet that was the only time I ever saw my dad cry.
I am sharing this info with you so that you will understand when I say that I feel like I know how you must feel. It sounds like you will need to be very firm when speaking to your doctor. You mentioned that you have been through 4 other docs and no one wants to perform the hyst, but they all agree that you will not be able to bear children and yet you will be on meds for the rest of your life. Have you considered taking an older family member to the doctor's with you for more support? Maybe if your mother went along with you, that would help to convince the doctor that your decision has been made and you are ready to have a hyst. It is also amazing how much a mom will voice her opinion when it is her own daughter involved. If you were married, I would say to take your dh, but considering that you only mentioned your boyfriend, I think that I would ask my mother to accompany me. I wish you the best of luck!! This decision, whatever it may be, has to be your own! It sounds like these doctors are thinking that you are not aware of how difficult menopause can be for some women. Just remember, whatever you decide, it's your body and a life that you will have to live with forever. I completely understand not wanting to live in fear! Again, I wish you the very best!!!
Unread 06-17-2001, 11:42 PM
Welcome and {{{HUGS}}}

Just wanted to say that my heart goes out to you; you are dealing with a whole lot, no matter what your age. I think Cyd has made a great suggestion of taking some back up with you!

Another thought I had was this: if you have a trusted family doctor, consider laying it all out for him/her and let them help you choose a course of action. This is just my own opinion, but sometimes I think specialists get a little tunnel-visioned and have trouble seeing the 'whole' patient, especially a patient who is brand new to them. I know in my case (not nearly as complicated, scary or life-threatening as yours), knowing that my regular doctor agreed with the GYN meant a lot to me because she knows about all of me.

Sending you best wishes...
Unread 06-18-2001, 12:11 PM
Welcome to hystersisters...

I'm sorry that you've had to go thru so much at such a young age. I'm 34 and I've had 10 surgeries thus far for ahesions, endometriosis, and ruptured cysts (2 of them) - both caused internal bleeding. I know how weak and sick they can make you. I was 18 when I had the first one, and 31 when I had the second one rupture.

My problems started at age 14, so I know what you mean about feeling "abandoned" by the medical community at large. Especially since your bleeding and pain isn't a visible condition, so everyone acts like you should just "get on with it and get over it". Like that's possible!

I've been on both sides of this issue. I was told at age 18 that I would NEVER have children. 3 doctors told me this. 2 months into my marriage, I concieved my first child. 2 years later my second came. I had many surgeries after my second child to alleviate pelvic pain and bleeding from endometriosis/pcos/adhesions. During one surgery my left ovary had to be removed because adhesions and endo had caused the blood supply to choke off and the ovary was essentially dead. My surgeon told me, "I would have taken the other ovary because it doesn't look healthy either, but you expressly told me not to. There's no way you'll ever have another child". So..a few month later when the pain returned, I scheduled surgery for a "possible hysterectomy" depending on how bad the endo was. When I went in for pre-op testing my doctor asked me if I was sure this time, and I said, "Yes. I'm sure. We've accepted that there will be no more children. So, yes". The nurse came in and said, "You can't operate on her". In unison, we said, "Why not?! It's been approved by the insurance company!". She said, "She's pregnant". Sure enough, I had my third child 9 months later.

Why do I say this. Because doctors don't know everything and medicine is not an exact science. There may be children after all - and without drugs or medical therapy. You're doctors aren't descrminating against you (I know it seems that way)...they're doing what they think is right. They've seen people like me and like you who miraculously become pregnant or want children later. They also know what's going to happen after hysterectomy. Let's make sure that we're talking the same language - when you say hysterectomy do you mean removal of ovaries and the uterus? If so, there are consequences - big ones - especially younger women. Your doctors know this because they've seen them - they've seen the after affects. Birth control pills and the side affects are not nearly as drastic as the hrt and menopausal side affects - and not nearly as deadly.

I understand your pain. I'm not saying not to have the surgery, just to find out more about it before you insist on it. At 24 the obstacles you're going to have to endure will be very costly. It's no cakewalk at 34.

If you've done your research on surgical menopause, hrt, and the consequences there-of (and I don't just mean what you've been told - but what's listed here on this board - see and the road less traveled on this board - and you've gotten first person accounts from people who've had both hysterectomy (removal of uterus) and oophorectomy (removal of both ovaries) and you know what you're in for emotionally (depression and anxiety can be overwhelming after tah/bso), financially (hrt gets very expensive and it's NOT optional for a person your age - you will be on hrt - and it may be more than one prescription (estrogen, progesterone, and testosterone) for the rest of your life), and physically - (it can affect your libido, your overall sense of wellbeing, your bladder, and all other parts of your body) then go ahead with your search. My guess is that you will eventually find someone to do the surgery. If that's what you really want then doing your research will help your case when pleading with the doctors to do it. So, you've got your work cut out for you, do your research and then tell the doctors that you know what to expect (and make sure that you do because this is not reversible and you will have to live with the consequences). At 24 this will be VERY hard. This decision is yours and yours alone to make - just tell the doctors what you've learned and that you're ok with it. Be very frank and up front with them about where you got your information and how adamant you are about this surgery.

What ever you do, make sure the next doctor you seek knows about the embolism and your other health problems so they can factor that into your health profile to help you make the right decision for you.
Unread 06-19-2001, 05:37 AM
age discrimination

I understand alot about what a hysterectomy entails, and if it was not for the fact that i had to see what my mother went through, i wouldn't be looking at this as a solution. But i am terrified to go through all that she went through. For as long as i can remember she had a terrible time with bleeding, but only in her late 40s did she finally get nearly as bad as i am currently. I am actually worse than she was. She didn't have polycystic ovaries and she still kept her monthly cycle. I on the other hand dont even have a cycle anymore, i just bleed...all the time. And my ovaries hurt so bad that i spend most of my time in bed unable to move. I certainly can't work in this condition, and it has also removed any chance of me going back to school(which i had planned to do this fall).

I understand that doctors are trying to protect themselves, but I have had medical professionals that are acquaintances of mine that are appalled thati have had nothing done. Every single one of them thinks that my current doctor should be running extensive tests and and talking with me about alternatives. She has done neither. She will not even let me ask questions at all. It is almost like she is using "hit or miss" medicine. It is why i am looking for a site of doctors recommended by patients. I am terrified that I am going to end up back in the hospital.

As far as the wanting children issue goes, i have never wanted children a long as i have lived on this earth. I know that i cant get pregnant from personal experience, and my boyfriend does not want children either. My boyfriend is so upset that the doctor has treated me terribly, but since we aren't married yet, they wont take him seriously. We have no sex life whatsoever. I have no libido, and even if i did, i wouldnt be able to act upon it because of the sheer volume of pain and bleeding. Its a real mood killer.

My mother lives several states away so she can't be here to help me. I was wheeled into the ER 3 days from being packed out of my house to move here (to live with my boyfriend). I stayed at my parents' house for 3 weeks after my surgery, at which point there wasnt a gynecologist in the area who would see me because i wouldnt be a regular patient. After my 3 weeks was up, i flew here because i had to prepare to enroll for school. Shortly thereafter all the REAL problems began and the onslaught of incompetent doctors has plagued me ever since. Apparently, according to the few women i have met and my boyfriend's co-workers, this area is notorious for this type of gynecological discrimination based on age.

I appreciate those of you who have taken time to respond to me. Probably the first time in a while that i dont feel alone, with the exception of my mom of course.
Unread 06-19-2001, 06:51 AM
Speaking from experience...

Go to another area to have your surgery. If the area has a "reputation" of "incompetance" as you stated above, then you definately don't want to be treated there. If you know someone who can help you out, contact them. Maybe they can refer you to a doctor who can help you with your problem. Perhaps your mom could let you stay with her while you get treatment? Just trying to help you find solutions....

Hang in there!
Unread 06-19-2001, 02:13 PM
age discrimination

Are any of your friends nurses? Sometimes they can help you find doctors. The endometriosis association may be able to help you find a doctor even though you don't have endometriosis. Ask the women in town if they know anybody good or if they know anybody who goes to someone out of town.

I agree with Adrite--if all the doctors in town are treating you like this, you need to drive as far as you need to in order to see a GOOD doctor. Hysterectomy is not a walk in the park and you'll need a decent doctor.

Maybe you could try posting in the state forums to see if someone in your state has a good doctor to refer you to. Good luck in your search. Let us know how it goes.
Unread 06-19-2001, 06:25 PM
polycystic ovaries

You should find a specialist (and it's probably going to be an endochrinologist) in polycystic ovary syndrome, not just hagggle with local gynecologists who may not be all that savvy. Polygystic ovary syndrom is a small subspecialty, but you may be able to find someone at one of the local teaching (university) hospitals, if there are any close, or maybe you could get in touch with one not too far from you. Or just ask everyone you can ask, especially doctors nurses who know a bit about endochrinological issues.

Good luck.

Unread 06-20-2001, 04:26 AM
Teaching hospital is a good idea.

I agree with Karolyn about going to a University hospital. I dealt for years with incompetence with MDs and found wonderful ones at the University of Illinois-
Chicago. I found at UIC there were a lot of doctors and each one specialized in a different gyn problem. If one couldn't help, another one could. Are you near Univ of Arizona? Maybe you could check it out. Good luck, my prayers are with you. Mary
Unread 06-21-2001, 11:49 AM
age discrimination

Those are all some great ideas, i will have to check out the university. I was supposed to go back to school in the fall there but in my current condition, im a total slave to my bathroom. I had also never heard of someone who specialized in Polcystic Ovary Syndrome. If i thought that staying with my mother would help, i would do it.. but she doesnt live in the same state that she had her surgery in. I also hate to leave my boyfriend alone for so long, I need his support more than anything.

I am in such a tough spot because i just moved here and i dont know anyone, and the only woman i know at all just moved here herself. Ironically, the only nurse I know hapens to also be my boyfriends mother... in Oklahoma. As nice as it is to talk to her, because this IS a gynecological issue, she would be appalled if i mentioned some of the problems. She is a really religious woman, and i think she would have a heart attack if i mentioned any sexual dysfunctions. I just know i would slip and say something about my lack of libido or my inability to have a sex life because of my constant bleeding.

I kinda feel like im stuck between a rock and a hard place, because so much is working against me. I have started asking total strangers who their gynecologist is. They just look at me funny and walk away. I have a few more things to try here, if i can't get an adequate solution, i will have no choice but find a doctor further away, and hope my boyfriend can take me.

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