"Help" for Adenomyosis

[Lo77]

Hi there!  My name is Lori Ann.  I am 31 years old, married, and have never been pregnant.  I was diagnosed - via a lap - two years ago with stage 3 endometriosis.  Most lesions were removed at that time, but I still continued to symptomatic (heavy, long, painful periods and significant daily pain).  I was put on Femara, then Lupron (for a total of 1 1/2 years post-surg).  There was no improvement and, to make matters worse, I fell into a very deep depression while on Lupron.  I was taken off of Lupron in February and had a Mirena IUD placed shortly thereafter.  Again, minimal improvements.  I had another lap/hysteroscopy done last month.  Most of the endometriosis had involuted and the only "significant" findings were ovarian adhesions and endometrial polyps.  It's been suggested that I have adenomyosis and that I should strongly consider having a hysterectomy.  I have a very rare coagulapathy (a polymorphism) and am on Lovenox, so I've now seemingly run out of treatment options, as I can't use traditional BC.  My main question is: Can adenomyosis alone cause infertility?  If there is a chance that I could get pregnant, I would postpone having a hysterectomy as long as I could.  I have such severe daily pain - taking alot of pain medications just to function "normally" - that I know I'll probably need to have my uterus removed at some time.  My husband and I would really like to have at least one child, although we've never really been told if that is a possibility or an impossibility.  I know that my situation is incredibly complex, but I would sooo appreciate any advice or guidance that you may have!  I could "hang in there" with the pain and terrible periods a bit longer if there is a chance that I could get pregnant someday.  I/we've had a hard time getting some straight opinions.  THANK YOU SO MUCH!  Blessings, Lori Ann

[boots1215]

I was told today that I possibly have adenomyosis.  I have 1 child and I am 32.  I may want another one day.  My OBGYN reffered me to a pelvic pain specialist.  I will see him in October.  I am in alot of pain and am very indecisive about hysterectomy.   The only tests i have completed are general exam and transvag us. If I truley have this, and I am going to have  trouble conceiving, why go through the pain every month? I am so confused about going through the work up of MRI and spending all of the money for a specialists when the pain is so severe, I can't get out of the bed for 3 days.  The heating pad is literally my best friend. Quite depressing huh?  i simply do not know what to do.  Lupron injections have horrible side effects.  I am sensitive to everything including birthcontrol. HELP...

[Heather5]

If I were you, I would set up an appointment with your current RE and tell him that you would like to try and have a child before having a hysterectomy. If he's unwilling to give you any good advice, I would set up an appointment with a different RE for a second opinion. There are lots of fertility drugs out there than may help you get pregnant, but I'm not sure what would be the right approach in your situation. But either way, I would at least get a second opinion if your current RE won't answer your questions.

As for painful intercourse, you could always ask to have an IUI done. It's much cheaper than IVF, and as long as your tubes are clear enough for the egg to travel down, that could be an option.

Take care, and good luck!

[paranoidpatty]

Welcome aboard,

I was diagnosed with possible Adenomyosis myself over a year ago.  My symptoms never went along with the expected symptoms for Adenomyosis.  I didn't have pain during periods or prolonged bleeding.  In fact, when I was diagnosed, my AF had been shorter and lighter than normal.  I also have a tilted uterus so that doesn't make anything easier.  But I wouldn't get a hysterectomy and I'd seek advice from an RE as the poster above said.  I've always had a tilted uterus and I had two children and not sure about the Adenomyosis or if I really have it, but if I did, it didn't affect me conceiving before.  Also, my doc told me Adenomyosis should not interfere with TTC.

So good luck to you!

[Lo77]

Hi!  Thanks so much for your note.  I just joined this forum today and am so glad that I did.  I've felt sooo alone in this journey.  My husband is incredibly supportive but can never really understand what I'm going through.

I'm seeing a RE (at Mayo Clinic even) and he's been pretty good.  I do accept that there aren't always sure answers but - wow - it's been difficult getting any information.  Sometimes I feel like no one wants to deal with the difficult, unhappy stuff so they just "ignore" it/you.  

Right now, it's just been suggested that I have a hysterectomy.  Fertility enhancing drugs haven't even been talked about.  I don't even know if I could get pregnant if we really tried.  I have so much pain that sex is certainly not easy (or fun, for that matter).  We can't afford IVF or adoption right now either, so it seems like an all-or-nothing decision.

Good luck to you!

Blessings, Lori Ann

[Heather5]

I'm so sorry you're having to go through all this. What type of doctor have you been seeing? I would highly recommend seeing an RE (Reproductive Endocrinologist) if you haven't already. He/she would be able to give you a better understanding of how your situation affects your fertility. Plus, they might be able to give you treatments and meds to help you get pregnant.

I wish you all the best, and hope that you get the answers you need soon!