Adenomyosis

[lulu747]

I saw my surgeon today.  I told her about all the crazy symptoms I was experiencing and the increase in stabbing pain as well as the blood clots I've been passing.  She did a trans-vaginal ultrasound and saw that my endometrium has not thinned as it should after 6 months of hormone treatment.  There was also a small mass which she thinks in adenomyosis.  She let me know that she will not be able to remove it if it is because I won't be able to conceive which is my number one priority other than stopping this horrific pain and misery.  She gave me some options.  Try Lupron until surgery Oct. 3rd or stop the norlutate again and have a period and then start Visanne for the next 7 weeks until surgery.  I opted for the Visanne as I am so afraid of Lupron and it's side effects.  I have reacted very badly to these kinds of hormone treatments in the past.  Synarel made me go out of my mind and I had a migraine for 6 months that wouldn't go away.  So I won't know the extent of the damage until surgery.  We said we would try to conceive naturally after surgery and if after 6 months nothing happens I will try the Lupron and IVF.
I'm really scared,  I knew something else was going on and this confirms I was right.  I've been waking up screaming every morning and experiencing stabbing pain in my cervix, rectum, ovary and low back.  She said it's because the norlutate even at the high dose is not working to suppress the disease and so every day is like the first day of my period.  That is EXACTLY what I've felt like so it was good to hear I wasn't crazy.
BTW just a re cap I have stage 4 endometriosis and had total excision surgery in 2010.  I was symptom free for 3.5 years but last October my symptoms returned slowly at first and then with a vengeance.  I've been on norlutate since the end of March but have continued to bleed intermittently as well as pass clots from my vagina and rectum.
I'm just wondering if any one can relate or thinks I've made the right choice.  She will not do a hysterectomy unless it's a measure of last resort and I desperately want to have a baby.  I'm 36.  I'm scared.
But also- at surgery time I will have been on pain meds daily for 7 months.  My dose is fairly high for the past 6 weeks to deal with the excruciating pain.  How can I begin to try to conceive while still on pain meds?  I will be tapering of course as fast as I can but I can't do another cold turkey.  The last time I got impatient tapering I went cold turkey and didn't menstruate for 14 months.
I feel like everything is just a mess and I feel overwhelmed and lost.
It's been an emotional day.  Any advice or words of wisdom would be much appreciated (:
xo
Lu

[ticked]

If you are looking to communicate like we do here your best bet is twitter. People are on 24 hours a day all around the world. You will always have someone awake. Facebook there is support groups like the ones I suggested but most are people asking questions and people responding.

[lulu747]

She didn't seem to think it was fibroids.  She's been doing a lot of work learning to read ultrasounds (from an Australian Doc- can't remember his name) BUT she did say she wasn't certain it was adeno, she won't know anything until surgery.

In terms of the pain meds, for now there is no way I could lower the dose.  I am in excruciating pain and barely functioning taking what I am now.  Hopefully I will be more successful with the Visanne and will be able to lower my dose- if not I will have to do an aggressive taper and won't try to conceive until the pain meds are out of my system.  As it will probably take me 6 weeks to recover to the point I can have intercourse, that should be ample time to taper.  I'm taking 48-56 mg a day of hydromorphone.  It will probably go up for a few days post-op but I think that's a manageable dose to taper from.
After my last surgery I was on 100 mcg of Fentanyl/48 hrs and 60 mg of hydro.  But I'd been on opiates for 6 years and so my tolerance had built so high.  It took me a year of tapering to get down to 140mg of oxy/hydro.  Then I just went cold turkey because I was sick of the pain meds and the side effects and was very depressed.  It was easy for me to do then because I was unemployed and had total support.  It was an awful detox but I felt way better and was in 90% less pain a month off opiates than I was on.  It was very, very hard for me to go back on any pain meds after going through that.  But my life would be completely unlivable without them right now.

I hope it's fibroids and not adeno.  Although my symptoms are pretty congruent with adeno.
I'm just trying to stay positive and hope the next 7 weeks passes quickly.  I've had to hire teachers to cover my classes for the fall semester as I know I will be in no shape to teach until I've recovered from surgery, so that is a weight off my shoulders.

Ticked- can you tell me how I connect with endo support groups online?  I've joined the ones you mentioned on Facebook but cannot figure out how I can communicate with other members.  I really need to connect and talk with others.  I'm feeling very isolated and alone right now.  I have wonderful family support and my partner is incredible, but I really feel the need to connect with endo sisters who are going through similar journey's.
Thanks.
Lu

[ticked]

I think you should talk to the surgeon about tapering off the pain meds and maybe trying a lower dose one. That will be hard if you have been on it that long but I would try to start doing that now if you are going to have surgery and trying to conceive after.

Is it possible you have fibroids as well or instead of adeno? I thought for sure I had adeno and it ended up being fibroids. I was shocked.

I am glad you got some answers :)