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Just Diagnosed....now where do I go? Just Diagnosed....now where do I go?

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  #1  
Unread 02-16-2008, 02:35 PM
Just Diagnosed....now where do I go?

Hey! I'm new to HysterSister and have many questions. After a recent laparoscopy procedure, I was diagnosed with endometriosis and PCOS. I don't know where to go from here and I am soo frustrated. I have continuous, unmanageable pain and I have heavy bleeding with huge clots. My doctor is pushing these medications on me (Depo Provera or Lupron Depot) that have really bad side effects/risks. I know these side effect are not inevitabilities, but I don't know whether I am willing to take the risk. The benefits do not seem to outweigh the risks. Plus, if I do get off of the medications, the symptoms of the endo and PCOS will occur all over again. I'm tired and seriously cannot continue like this. My doctor hinted at an oophorectomy but does not really want me to do it since I am considerably young. However, she did say it was an effective way to treat the pain. I am actually considering to have this surgery and am definitely not going to take the medications. I'm soo lost and this has taken an emotional, physical, and mental toll on my life. I have taken this decision after much consideration. Being that my doctor is so unwilling, what should I do?
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  #2  
Unread 02-16-2008, 03:59 PM
Just Diagnosed....now where do I go?

Doctors are generally unwilling (in my experience) to do hysterectomies on younger women in case they change their minds about their fertility.

I flat-out refused to go on Lupron after a bad experience with Depo Provera and repeated trials of different meds, and doc finally gave me a hyst, at age 33, nearly 4 years after I started seeing him - even though my hubby had a vasectomy years earlier.

I can't tell you what to do, or if your doc is wrong or right, but a second opinion couldn't hurt...
  #3  
Unread 02-16-2008, 05:50 PM
Just Diagnosed....now where do I go?

Thanks for the tip, JulieBr. I don't know, I mean, I don't want to be put on these shots. And, as bad as this sounds, having children doesn't appeal to me as much as being pain-free and being able to live a "normal" pain-free life. i feel like a I'm constantly tired, depressed, and exhausted from this pain and from the bleeding. Do you think I should go and outright say that I would prefer the surgery over meds?
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  #4  
Unread 02-16-2008, 05:52 PM
Just Diagnosed....now where do I go?

By the way, I do hate the fact that my doctor is placing fertility over my overall mental and physical well-being. I'd do anything to get rid of this pain.
  #5  
Unread 02-16-2008, 09:12 PM
Just Diagnosed....now where do I go?

I don't think it sounds bad at all for you to say you'd prefer a pain-free life rather than preserve your fertility. You are absolutely entitled to your opinion. I happen to agree with you - I never wanted children, and found that the medical/gynecological system is really not geared towards that option at all.

However, if there is any part of you that thinks you might ever want to give birth to children, please consider that before you decide to get a hyst. There are also menopause symptoms and other implications of surgical menopause to consider, and the decision to take or not take HRT afterwards.

I decided to have my ovaries removed because I had other hormonal problems besides endo, but I also decided to take estrogen replacement because I was having menopause symptoms that interfered with my daily life. Some women don't take estrogen after a hyst for endo, because estrogen feeds the growth of endo. However, I had very little disease (just a lot of pain), and what disease I had, grew very slowly - doc was able to determine this at my second lap. Also, the vast majority of my pain was with menstruation, so removal of my uterus would remove the chance of that pain returning. Because of these factors, I decided to risk taking estrogen. A woman with no other hormone problems, lots of fast-growing endo and daily endo pain might make a different decision with regards to an oopherectomy and ERT. Everyone is different, and you have to make your own informed decision.

I think you should definitely research all the options, and get a second opinion. And once you make your decision, tell your doc what you want, straight out and repeatedly. Sometimes we forget that docs are not in the driver's seat - we are. They are there to give us information and to serve our needs, not to make decisions and declarations about our health.
  #6  
Unread 02-16-2008, 09:49 PM
Just Diagnosed....now where do I go?

Hey JulieBr. Thanks so much for the response. I'm glad to know that atleast someone can relate to me in terms of not wanting to have children. I mean, my doc thinks I'm crazy to want a pain-free life over children. I have thought through with the decision to have a hysterectomy/oophorectomy and have considered the merits and tradeoffs of both the meds and the surgery. Not that I'm pro-hysterectomy or anti-hysterectomy, but it seems to me that surgery makes more sense in my case. And, you are right. I think my doc convinced me that it wasn't my choice......Thanks for the uplifting advice. I needed that after a week of debilitating pain and depression.
  #7  
Unread 02-17-2008, 12:55 AM
Just Diagnosed....now where do I go?

Hey,

I'm 25 with horrible pain, bleeding, the lot; and after talking things over with my doctor he's come to realise that being okay with loosing my chance to give birth is not important to me (I've planned to adopt since I was 7-seriously), and it was not just a rash decision that I may come to regret. I have heard of others docs wanting them to speak with a therapist abour it all. Maybe you could try to discuss that idea with your doc- or seek a second opinion and see what another doc thinks looking at your situation.

Good luck!!!
  #8  
Unread 02-17-2008, 08:11 AM
Just Diagnosed....now where do I go?

((Ana_Molly)))

Please consider consulting an endometriosis specialist, if you have not already. These specialists typically have a heart for our struggles and respect our choices. And, they are YOUR choices.

Best wishes to you, whatever you decide!

  #9  
Unread 02-17-2008, 08:15 AM
Just Diagnosed....now where do I go?

Hey Krissyroo! I'm glad to hear that people in your life, (i.e., your hubby) are so understanding. Although I'm not married, I have a very few supporters who support my decision not to have a child. I don't think they understand the severity of this disease and the emotional and physical tool it can have on a woman's life. I realize I'm not the same person I used to be. I was outgoing, bubbly, vivacious. Now, I spend most of my times crying on the couch wondering when will the pain go away. You are right, this isn't just a rash decision I have come up with to stop my pain and bleeding. I've done my research and weighed the pros and cons. I don't know why my doctors don't seem to understand.

I have a "conference" with my doctor on Tuesday. She wants to discuss my "crazy" decision of not taking the meds and wanting to go with the surgery. I just want to say thanks for the advice and support. I'm going to try to be more assertive. Wish me luck!!!!!
  #10  
Unread 02-17-2008, 08:21 AM
Just Diagnosed....now where do I go?

Hey Michelle!
I've actually considered going to an endometriosis specialist. I've gotten mixed reviews. Some say that they push meds on you and don't believe in surgery. Did you ever go to one and ever push for the surgery? Were the compassionate and willing to give the choice for you course of treatment?

I'll probably try finding one after my next visit with my gyn. I just need someone to understand the plight I'm in. Well, thanks for the advice and the hug. I'm in desperate need for it. I'm trying to hang in there, but it's getting harder and harder.....
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