Starting the Journey

Hello, I am a 27 year old with endometriosis. I was diagnosed at 23 through a Lap. Luckily my GYN was able to take care of the endo enough for me to conceive not once but twice in the 3 years that followed. Thanks to my GYN finally listening to me (I had been passed off for years as just having hard periods) I now have two beautiful children, ages 18 months and 3 years old. However, the pain has returned on a whole new level. I have been suffering with pain since I stopped nursing my daughter in May. I have also had hormonal complications that cause severe headaches and an elevated temperature. Due to a move in April I was forced to find a new GYN after these problems started. This new GYN has been a godsend I only wish I had found her right when the problems started again. Unfortunately I went to our family doc who has given me every test imaginable (include three CAT scans, a Lumbar Puncture, and a Bone Marrow Aspiration). Although he is a good doc he refused to consider my endo as the problem. However, the new GYN thinks the endo is the source of all my problems. I am currently on Lupron and if it helps with the fever control we will move on to a hyst.
Sorry this is long, but it is my first message and I had a lot to get out. Has anyone else had an experience with hormonal problems due to endo?
Thanks for listening!

Hi there!

Welcome to HysterSisters!

I found your post in the read-only 'endo stories' forum and have moved it here for Options/Alternatives support.

This forum is a wonderful place to gain insight and info on your symptoms and options.

I wish you the best as you contemplate what will be the best course for you to take.

s,

Toonces-
Thank you so much for reading my post and moving it to a better location. I am new to this and I am not sure where to post to get the best response. After reading a few posts here I realize that the lupron to surgery is pretty normal.
Thanks Again!

Hi Endowendo,

Yes, endo certainly can cause a multitude of problems. Although I never had the Lupron shots, my gyn told me that trying the Lupron shots can be sort of a "test" to determine if a hyst will provide relief. If the Lupron helps ease the pain, etc. then a hyst may resolve the endo issue.

The tough thing about endo is that there are no guarantees that a hyst will 'cure' it. While some ladies do very well and never have a recurrance after a hyst, others do experience regrowth. The more severe your endo, the more likely you are to have regrowth.

While many gyns recommend removal of your ovaries at the time of your hyst when you have endo, your age is a big factor to consider. You are very young. Younger gals tend to have more difficulty adjusting to ovary removal than older gals do, in terms of getting the HRT dosage just right.

Keep reading and researching and we'll provide support, whatever you decide. It's best to have a clear understanding of all your options and the possible outcomes. I also highly recommend you get a second opinion prior to making your final decision.

Best of luck!

Beth

Beth-
Thank you so much for your message. My doc and I have discussed the return of endo and the possibility of future surgeries. However I truly believe it is worth it at this point. The ovary removal is concerning, but my understanding is if they stay the chances of endo returning goes way up.
Thank you again for your message, it is so nice to have people to talk to that know what I am going through.

Hiya Endowendo...that's just a fabulous nick, btw!

I had endo before my hyst last July - I was 28 at the time of surgery, and although endo was diagnosed, found and dealt with, it was actually something else (adenomyosis) that caused me the most pain/bleeding.

With that in mind...even though I had endo, I retained both ovaries and my cervix. I've had no pain since surgery, and so far no return of the endo - granted, I'm only 6 months post, but this is still good news for me!

All in all, the final decision of course is yours - I've talked to women who've had the same surgery as yours, and women who've retained ovaries even with a dx of extensive endo - and realistically there are no consistent indications of who will see a return of symptoms, and those who won't see any at all...it seems to be just "one of those things", although it does appear that the girls who have severe endo to begin with are those most at risk for endo recurring afterwards.

Research all you can - talk to other women who've had surgery for the same reasons, and talk to perhaps a couple of other specialists. Knowledge is our friend

Many s and blessings for a safe surgery and smooth recovery,

Tess

Tess-
Thank you so much for your reply. I went for my 2nd lupron shot today and for the last week I have felt better than I have in the last year. I know that it is not an easy decision to have a hyst especially with the removal of the ovaries, however I am willing to do what ever will help. I am going to continue to research and discuss the removal of the ovaries with my GYN. The more messages I get from you guys the less crazy I feel with my condition (problem with family doc from original post). I is so wonderful to be among others that know what I am going through.
I do have a question though, what is adenomyosis? I have heard other people mention it in their emails and to be honest I don't know what it is, how it is diagnosed or if it might be part of my problem. Just looking for more info.

Thanks Again!

Hi there Endowendo,

Adenomyosis is often described as endometriosis 'inside' the uterus. Adenomyosis is a condition where the uterine lining begins to grow into the muscle of the uterus. Sometimes ladies with adeno are described as having a uterus that feels "boggy" during an examination. The only 'cure' for adeno is a hyst. Adeno can cause lots of pain and excessive bleeding during periods.

Hope this helps!

Beth