New here--diagnosis help, please!

Hi ladies,
I'm so glad I found this board. I wasn't sure where to go to ask some questions, but it seems like you all are very knowledgeable. Here's the short version of my story:

My gyn is wondering if I have adeno, endo or a combination of both. I am 32 and have had heavy bleeding, horrible cramps, diarrhea and headaches with every period since having my DS almost two years ago. I can't take regular BC pills since they caused high blood pressure in my early 20s, so my doc put me on the mini-pill. I had 3 full periods in 6 weeks on it and felt sick all of the time. So he took me off and is now wondering about treatment options. I'm going in for an u/s to rule out other problems next week, then he'll send me for an MRI. But he laid out the possible next step: Depo shot (probably not a good idea considering my other problems with hormones), Lupron, IUD, and if all else fails, a hyst.

So my questions are: what do you think of a diagnosis? What about treatment options?

Thanks so much!

I am sorry you are going through this. The ladies on this site are wonderful. They have helped me through so much. I had endo. and adeno. (I just found out the endo. is back) and I had too have a TAH & BSO. I tried Lupron and it didn't help me. Although everyone is different and it may help you. This site has alot of good info. search on the google search (checked hyst.sisters) look up endometriosis symptoms. My symptoms are: heavy painful long and irregular periods (when I had a period) left sided pain and back pain, diarreah, migraines, pain during intercourse, and after intercourse. Take care of yourself and good luck on whatever treatment you decide is best for you.

Lia

meena, I would consider going to see an endometriosis specialist who deals with the precise excision of endometriosis and would greatly increase your quality of life. I know when I had my hyst I wasn't thinking all that straight because I was just told I had endo. I wanted to be done with my horrible periods and so I opted for the hyst. In hindsight I may have been able to keep one ovary, but the other was removed in an emergency surgery because it was tortioned (very badly damaged and twisted) by the endo on it. When they went in to do the hyst the other ovary (only 5 wks later) already had another cyst growing on it. I had given my doc the go-ahead to take it all and I'm glad she did.

However, it did not take away all the endo (as a hysterectomy doesn't deal specifically with endo, but our female parts) and I'm still having problems nearly a year later.

I am going next week Tuesday to see an endo specialist and am looking for answers myself. Never settle for a hyst unless you have exhausted all of your options and you are truly ready to. Everyone is different and you may be like me and just be at the end of your rope.

Best of luck to you and please keep us posted on your progress.

Trish

Welcome to HysterSisters!

I want to chime in that seeing an endometriosis specialist could be one of the wisest things you could do for yourself if there is a suggestion that there is endometriosis! They tend to be very knowledgeable and have superior surgical skills. Since a hysterectomy is not a cure for endometriosis you want to be sure that you have exhausted all other options and that this surgery is the right one for you. Also, a second opinion can be very beneficial to either confirm what your first doctor is suggesting or else a second opinion could suggest some additional treatment options you might want to try.

Before making your decision, I would suggest reading through the Endometriosis Resources here on the site as well as continue reading through this forum. Make a list of pros and cons for you for each treatment option to help you decide what is best for you.

I would also suggest at least having a laparoscopy before deciding on the hysterectomy. A laparoscopy would allow your doctor to look around your pelvic region to see what might be going on. Endo can only be 100% diagnosed with pathology after a surgery. Also, a hysteroscopy could allow your doctor to see what could be going on inside of your uterus. Adenomyosis can only be 100% diagnosed after pathology although some doctors are using MRIs to help diagnose adeno prior to a surgery. The more you know about what might be going on inside the better able you could be to make the right decision for you!

Whatever you decide we will support you and offer you support and information! Keep us posted and in there! s

Hello,

I was only fully diagnosed with the lap procedure. My results came back severe stage IV endo w/ fluid build up. The pictures from that lap almost made me faint!

Lupron helped me more than the other treatments in the begining. Of course there were side effects from it. I tried provera pills, bcp, lupron, natural treatments and in the end ended up with a total hysterectomy.

There are many treatment options out there today that can really help with the endo and you need to be properly diagnosed first.

BW to you!

I have to agree with boxers4me and Weiser, a lap is your best choice. Do some research though. I had a lap done in May 08 and was dx w/ endo and had a large cyst on my ovary. I'm having a hysterectomy done now b/c of the constant pelvic pain---on my cycle or not, but daily it's awful!

Good luck to you=) Let us know what the dr says

Clarissa