Suffering for 23 Years with endo

I was diagnosed with endo at the age of 15. I'm now 38 and I must say that it has not been easy with living with this for so long. I have had every surgery/treatment that you can think of and still no relief. With each surgery, I was told it was worse and worse, with the endo all over organs, in my lungs. I have always felt that the surgeries was good enough but in essence I was hurting myself because it left so much scar tissue, which caused more pain. I was on pain management with some of the heaviest meds. I had to stop that because I couldn't function and I did not like the way it was making me feel. I will be getting a total hysterectomy after the summer. At first I was confused and hurt, but I've come to terms with it. It doesn't make it any easier. I hope I can wait because the excruiating pain is saying other wise.

Hi Mrsmac
Welcome to Hystersisters! You poor thing. I'm sorry you are in so much pain. I'm very glad you have joined us. You will find a lot of women here who are also dealing with endo. Hopefully their experiences will be helpful to you too. I just wondered why you have to wait until the end of the summer since you are in so much pain right now?
I have moved this post out of the endo/adeno stories so you can get some replies from other members. That forum is a read only forum and no one can reply to you there. Please feel free to share any questions or concerns you might have and let us know when you have a date set. Then you can begin posting in pre op with the other ladies in waiting. Please take care and let us know if we can help.
's, Rita

First I want to you know you are not alone. I had a hysterectomy for endo too. I suffered since I was a teenager shortly after my first period. I was diagnosed at 20.

Don't blame yourself because of the surgeries you had that can cause more scar tissue. You did what was best for you. I had quite a few laps myself and I used every medication on the market. Nothing worked well for me.

Did you have any of the gel sprays used after wards? Those tend to cause more scar tissue. I just found that out myself.

I was in a different place than you. I wanted a hysterectomy when I was 28 and 29 because I was tired of living with the pain. I didn't get one then, I had laps instead.

Since then I was using pain medications, herbs, and natural progesterone cream because the doctors I had seen wouldn't even consider doing a lap let alone a hysterectomy.

This January I met my wonderful doctor. He read my medical history and told me it was like the other doctors were trying to reinvent the wheel on me and he offered me a few choices and I decided on a TAH/BSO. My eyes teared up. I felt like I was finally understood.

I had pain daily up to my surgery. I was on prescription pain killers.

I can say that since my surgery I have my life back. I was told the day after my surgery I looked better than I had in years. I was uncomfortable, but nothing like endo pain.

Now I'm 8 weeks out and I feel great. I'm doing things I haven't been able to do for years. I felt like I got my life back.

I do understand how you are feeling and I know there are other ladies here that know too.

Please don't live with the excruating pain if you don't have to. Hopefully the doctor will call you in something that can help you with the pain.

Feel free to email me if you want some one to talk too.

Sharon

Thanks to mrsdolittle and preciouspearl. Mrsdolittle, even though I am in alot of pain, I asked to have the surgery after the summer because I wanted to have all my business in order, even he was a little hesitant and he want to build my blood count up, plus I would like to donate my own blood for my surgery, just in case...Because of all the heavy bleeding, I am anemia. On Monday he took a biopsy and I tell you, it took the life out of me...But I am fine today. Preciouspearl, I have been on several gel sprays - synarel, Lupron, etc. Of course those meds put me in a medical menopause state, but as soon after they took me off, I was back at square one. Like you my doctors always told me I was too young for a hysterectomy, so every 2 1/2 years, I was have major surgery and in between, I was having D&Cs and everything else they could name of. Now that I have change doctors, he sat me down and explained alot more to me and he flat out told me that if he opened me up and it was bad, he would do the hysterectomy after seeing my history. Since we are already in June, if figure I could wait, especially after dealing with things all these years. I must admit though, this pain is by far the worse I have had in years. I know it sounds like I am torturing myself, but I'm trying to give my new doctors to get my records to see 23 years of history. He did agree to that also. I will definitely post my date as soon as I get it. I would like thank you guys for the support.