new here-looking for thoughts on endo

So I am guessing from reading that this is the right place. The basic story: I have had problems with my period since day 1 when I started, I just lived with long heavy, painful periods. I was put on birthcontrol when I was about 18 because I was anemic and sick all the time. Besides that I just learned to live with being sick one week a month.

About 2 1/2 years ago things changed. I started having pain all the time and ended up in the ER twice with my doctor thinking appendix. I really just kept being blown off, I finally found a new OB/GYN that did an exploratory lap and diagnosed me with endo and I did Lupron for six month and back on to birthcontrol. I did well for about 11/2 years and then the nightmare began. Last year in July I ended up in the ER with severe right lower abdominal pain, was in the hospital and ended up getting my appendix out. My pain really never went away and I worked with the doctors. My Internist has been great.

I saw a new GYN doctor who refered me onto a specialist. Ultimately I ended up this last November having surgery again. I was found to have Grade 4 endo, adhesions, bladder and bowel endo and interstetial cystis. The doctor did excisional surgery and I felt great after surgery and up until this June. Things have slowing gone down since then.

I am back in pain, constipation issue or being too loose, nausea, tenderness, and a pulling pain at times. Sometimes when I go to the bathroom everything feels like it is going to come out. Some of my family thinks I am crazy and so do my friends. I am currently now being worked up for gallstones vs adhesions, vs cyst.

I have talked to people about having a total hys and have gotten varied response. I am scared to think of going the route but scared to keep living the way I am.

What are some peoples experiences? It was recommend I post here by someone in an endo support group. I am so confused, tired, and plan and simply warn out. I am even trying accupuncture which helps a little but I still feel crummy most of the time and just pretend I feel fine because it is easier than explaining and getting the I thought you had surgery for that already?

Thanks for any guidance.

Dear peanut1975

First things first:

Gosh, you sure have been through a lot!

I don't have enough experience to give you the information you need, but I'm sure some lovely women will be along shortly who do. From what I've read here, though, my understanding is that endo is not solved completely by a hyst if it has already spread elsewhere. But it seems to me that anything which would at least reduce the agony for you would be well worth it. Again, I don't know, myself, but I still felt moved by your struggle to send you my heartfelt hopes that you will soon have a plan by which you can move fully into life and living well!

Meanwhile, here's a link to the ENDO thread on this website.
https://www.hystersisters.com/vb2/forumdisplay.php?f=114

Welcome to HysterSisters!!!

I would think you were me! In all seriousness, your post is almost the same, word for word, as my reason for being here for the first time. After several years and the birth of my two boys, I had a lapo last summer for the exact reason--right side pain--increasing--missing periods, extreme bleeding, cramps-- they found nothing wrong. Two weeks after that, I had an emergency appendectomy. I thought the right side pain would be gone. NOPE It's going three years, but, now I've learned I'm premenopausal--FSH # are high, but my estrogen is at the right level too. I get the hot flashes--you name it. I'm now pondering--yank it all! I'm thinking it might be the only solution. I'm "only" 40 but done with having children. Everyone I have talked to who has had some or all removed wonders why they waited so long. The only reasons I can think of why not to do it is what if it doesn't solve anything...and recovery time. I have two boys,12 & 8, I work part time...will there ever be a less "busy" time in my life? My gyno has talked about surgery as an option--he mentioned it would be through the vaginal...but he is giving me the lets wait & see in another month. I guess no one can decide for me but me--I would like to hear from others, but Peanut I'd like to chat more. Also--when all else had failed I was dx with Fibromyalgia--maybe its not that at all. Sorry to ramble

I would love to talk more also. My biggest struggle is that I am only 31 and do not have any children nor do I have a husband so children would not be any time soon. My doctor has told me because of the position and scarring in my uterus, it is a 50/50 chance I would carry a child to full term.

That is something to struggle with. Because I already have my kids it'd be easier for me to say go do it. At this point, I'm having to look at the "quality" of my life I'm now spending with them..and it seems to be getting "uglier" everyday--lack of energy, rages, pain....they say, when Momma ain't happy...nobody is happy...do you have a significant other in your life to discuss this with?

Hi Welcome,

I too had a hysterectomy (tah/bso) for endo. I'm 36. The biggest suggestion I have to know for sure that it is what you want. When in doubt don't do it.

I don't have children. Luckily my husband is very supportive.

It is the best thing I have ever done for me. I feel better than I have in a long long time. I was never given the option to have a hyterectomy until this year because all my other doctors wouldn't consider it or they gave me the excuse that I was too young.

My doctor said something that made me feel so much better. It was like the other doctors were trying to reinvent the wheel with me.

The one suggestion is to make sure your doctor can remove your endo from where it may be attached. My doctor had other specialists on stand by if he needed them. Thankfully I didn't need them.

There is a post going right now 32 too young for a hysterectomy. There are quite a few responses and suggestions as well. In this area of posts.

I am so sorry to hear about your situation. A hyst is such a major surgery involving so many emotions. Being young does not help.

I had my hyst right after I turned 25 due to stage IV endo. But, I already had two little boys and a DH, so my situation was less emotional that what you are facing.

Do seek a couple of opinions about what is best for you and what options are available. If at all possible, see an endometriosis specialist. Another good option is a reproductive endocrinologist as you will need assistance with hormone needs after your hyst especially if you also have your ovaries removed. Additionally, some ladies have had a gyn/oncologist assist with their surgery to help remove as much endo as possible.

We have many endometriosis resources which you might find helpful. And you can use the search tab at the upper, right of your screen to search for other threads that include "endo" or "endometriosis."

I do not regret my hyst at all; it was the best choice for me. Actually, after my lap, it was determined it was the ONLY choice for me. Not having a hyst would have made my health much worse.

But while my hyst helped me in many ways, a hyst does not cure endo and it did not cure me. I never really had pain prior to my hyst, but I do now. I deal with endo, adhesion, and scar tissue pain. Any endo that remains after surgery, whether it is left due to the high risks of removing it because of location (I have some on my bowel walls for this reason) or because it is microscopic and thus undetected, endo can be fed by any estrogen you either take in (HRT or even Black Cohosh or Soy) or your own body produces or has stored (such as in body fat or the endo itself having its own supply).

Because of my age and family history, my dr and I felt it was best for me to keep my ovaries for my overall health, so this does affect my endo. You need to talk to your drs about what is best for your particular health situation.

Unfortunately, endo is such a tricky and awful disease, with no definite answers. I hope you are able to find some support and information here at the site to help you decide what is right for you!

in there and many best wishes!