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I am sooooo tired of this! I am sooooo tired of this!

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  #1  
Unread 06-09-2003, 11:30 AM
I am sooooo tired of this!

Well ladies, I have been dealing with cyclical pain since my ovaries "woke up" after my surgery at about 4 weeks post-op. I have been suffering every month for the last year. After being passed off by my gyn to the uro, I wrote a letter to my gyn and finally got his attention and now I am on BCP's again. I am almost through my third package now. Before going on BCP's, my cyclical pain/acne/breast tenderness came every month at the same time. Well, the first month on BCP's, I felt like if I had a uterus, I would have had three periods during that time! Then with the second package, I felt great.....until the last couple pills. Now I am in my third package with one week to go in it and I am feeling horrible! More zits, more breast tenderness, and more ovarian pain!

Here's the weird part.....when I went on Lupron 2 years ago, I started growing facial hair! Gross, I know, but at least it's very light and hardly noticable. Anyway, once I was off Lupron, the hair stopped growing, but it was still there. Once I went on the BCP's, the hair started growing again.

Does it make sence to have the PMS type symptoms AND the facial hair growth at the same time????????? I am the only one that notices the hair, thank goodness, but when I have to actually trim the hair above my mouth, things are getting a little out of hand

I have not called my gyn yet because I don't know what i want to do. Do I try another pill? Do I just go for it and have my ovaries taken out? I feel like having my ovaries out is such a gamble! I am tired of taking medications......I'm taking the BCP's for my pelvic pain, 5 different bladder medications, and Protonix for my GERD. I am so tired of this and so ready to give up on all of it! Maybe I should just go for it! I could have my ovaries out, I could have surgery for my GERD/hiatal hernia, and have the bladder distention and be done with medications......of course, then there's HRT. And if I think the facial hair is bad now, just think how it might be if I have my ovaries removed!!!!!

I'm rambling because I'm confused about what to do! Someone give me the answers!
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  #2  
Unread 06-09-2003, 12:00 PM
I am sooooo tired of this!

Pasdechat,
I have pain that *seems* to be coming from my left ovary. I saw the Pelvic Pain specialist last week and he is sending me for a pelvic venogram. Since the doctor is in a different state I had to call every hospital radiology dept to find Interventional Radiologist in the town I live in who could perform the pelvic venogram studies. I mention this because it is a way to check for pelvic congestion in the ovarian veins. That is what I had in my right ovarian vein which caused terrible trouble with my right ovary (horrendous pain for years - eventually I had it removed).

ANyway, it might be something to look in to as I think you mentioned you had the hyst for pelvic congestion. Perhaps if you could have the test done it would provide an indication of whether or not embolizing a vein in there might provide relief for a period of time. My impression is that the embolization procedures can provide relief for a few years. If my test comes back positive I think I will try it and see if it works even for a while.... it may get me to menopause when the symptoms are supposed to die down anyway.

My other problem is that I may still have pelvic congestion still in a vein on my right side (where everything was taken out). So, I think the ebolization may be my only option for relief on that side since there is nothing left to remove. I guess it happens sometimes as I have read some case studies of pelvic congestion after TAH-BSO from Stanford Medical center.

If my pelvic venogram is normal then the Pelvic Pain specialist wants to look at a combination of pelvic floor muscles and the pudendal nerve being part of the problem... this is more unlikely on the left side since my trouble there only started after I went off the pill... it could be why my right side is still hurting though since the point of the worst pain is where a large vein. the obturator internis muscle/tendon, and the pudendal nerve all come close to each other.

Maybe another pill would work better? I have had terrible acne on some BC pills and on others I had lovely skin.

As far as the facial hair. The derm I see indicated that alot of it is hereditary and becomes more prominent as we get older regardless of hormones. THat has been the case with me. I use Vaniqua which works pretty well at keeping it manageable. Maybe you could look into that.

Best of luck in finding an answer. Keep us posted. I don't want to loose my left ovary either and can really relate to your struggle with that.

SBlumen
  #3  
Unread 06-09-2003, 12:16 PM
I am sooooo tired of this!

I forgot to mention, the pelvic pain specialist prescribed the Ortho Evra patch for me to try continously. I haven't started as he wanted me to wait until after the pelvic venogram. It is the birth control patch advertised on TV. He did this because I told him in the past I had had a terrible time with BC Pills and dyspepsia. I do not know yet if the patch will/will not cause me dyspepsia symptoms again. Taking the ortho evra is a way to test whether the pain on the left side is relieved if ovulation is supressed. Time will tell.

I thought I recalled that you were taking Levlen. If that is the case I can tell you that I had a terrible time with that BC pill... it caused me much trouble with acne. THe one that was the best for controlling the left sided pain and the acne for me was orthotrycyclen which I took prior to the hyst. That one however was the worst for the Dyspepsia.

AGain, best of luck finding an answer.

SBlumen
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  #4  
Unread 06-09-2003, 02:06 PM
HI PASDECHAT

HI PASDECHAT, GOSH YOU HAVE LOTS GOING ON TOO.JUST WANTED TO SAY I FEEL FOR YOU SWEETIE.ITS SO OVERWHELMING WHEN YOU DONT KNOW WHAT TO DO.YOU ARE ON LOTS OF MEDS,BCS, A HERNIA ETC. I CAN SEE YOUR CAUSE FOR CONFUSION. YOU HAVE TO ASK YOUR SELF..WHAT IS IT THAT YOU TRULY FEEL YOU WANT TO DO?IF YOU KEEP THE OVARIES YOU WILL CONTINUE TO SUFFER OBVIOUSLY. IF YOU GET THEM REMOVED YOU WILL BE PAIN FREE OF THE CYCLE PAIN BUT THEN YOU WILL HAVE HRT ISSUES THAT ARENT VERY COMFORTABLE.. BUT EASIER TO FIX.YOU HAVE TRIED ALOT OF THINGS TO ELIMINATE THE PAIN THAT YOUR OVARIES ARE GIVING YOU AND SO FAR IT APPEARS THAT NOTHING IS HELPING AND IF IT DOES IT SEEMS SHORT LIVED.SO IF YOU LOOK AT THE SCALE WHICH SIDE IS MORE COMFORTING TO LOOK AT?LIVING WITH OVARIAN PAIN UNTIL THEY FINALLY QUIT ALL TOGETHER, AND THAT COULD TAKE A LONG TIME(THATS THE LOWER SIDE OF THE SCALE) OR HAVE THEM REMOVED,BE PAIN FREE, DEAL WITH THE HRT ADJUSTMENTS WHICH DONT TAKE FOREVER TO BALANCE.(THATS THE HIGHER END OF THE SCALE)WHICH SIDE WOULD YOU RATHER SEE YOURSELF ON? THINK OF WHATS BEST FOR YOUR BODY AND MIND. OVARY PROBLEMS INCREASE BLADDER PROBLEMS IF FOUND OUT. HORMONES PLAY A PART IN IC IF THEY ARE MESSED UP. YOU MAY FIND IF YOU DONT HAVE OVARIES YOU MAY ELIMINATE SOME PROBLEMS FOR YOURSELF.GOOD LUCK DOLL.. I WISH YOU WELL...ALWAYS CHRIS
  #5  
Unread 06-09-2003, 08:18 PM
I am sooooo tired of this!

Oh (((Pasdechat))) sweetie! I know just how you feel! I am currently awaiting a reply from my gyn on this issue. I was put on bc pills at 9 weeks post op and have continued to have (increasing) cyclic pain even while on them. I stopped them 7 days ago.... didn't see the use in taking yet another pill that was doing nothing for me. I also have MPS/FMS and have been in a major flare since the surgery. And of course, we can't forget the daily bp meds. It is all so exhausting!! But what do we do?????? Not a lot of options for me as I don't have health insurance....I think if I did I would opt for having the ovary removed and taking my chances with HRT. All I can say is I KNOW and feel free to whine, vent, scream and pull your hair out to me anytime!
  #6  
Unread 06-09-2003, 10:16 PM
I am sooooo tired of this!

Thank you so much for understanding! I am still confused. I am really considering going through with the surgeries.....one to have my ovaries taken out and one for my GERD/hernia. I am in so much pain right now that I am beginning to think surgery is inevitable! I hate this. I hate having surgery....it's so scary! But would it be worth it? I've had three surgeries, all from the same doctor and I think going into surgery with a different doctor(for my GERD/hernia) would be really scary! Thanks again for understanding. It's nice to have people who understand what I am going through. I'll keep you posted. I need to get through finals at school and performances this weekend(I'm a ballet teacher, in case you didn't know by now) and then I will call my GYN and my GI doctor and my uro. I will tell my gyn and GI doctors that I want to try different meds to see if something else works better and I will make an appointment to see the uro because we are supposed to be scheduling an appointment in the OR to do a bladder distention.

Just tell me I will be better someday!
  #7  
Unread 06-10-2003, 05:53 AM
I am sooooo tired of this!

You will be better some day! And so will I and all the other sisters traveling this long and winding road. I'm sure of it....and hoping there is power in positive thinking.
  #8  
Unread 06-10-2003, 06:55 AM
I am sooooo tired of this!

Pasdechat

I am so sorry that everything is looking so confusing for you right now! I had no confusion about my ivaries because I had no choice in the matter, but I can imagine how you are feeling sweetie!!

I can really relate to the facial hair though!! I had androgen excess syndrome as well as PCOS and would have a FULL beard if I did not wax and shave it. My Gyn told me that once it is there, it is there. I had all of the tests on my adrenial gland and liver to see if that may be causing it but it is something I will have to live with the rest of my life. It is really sad when you go into the castle and the BIG thing you are most worried about is making sure that someone close to you will make sure your face gets shaved if you are unable to do it yourself after surgery.

I know it is a hard decision to make, but you WILL come to the right descision for you eventually. Take every step to make sure you did everything you could do before jumping into surgery. Just my suggestion.

Take care and you will be in my prayers!!

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