19 and frustrated!

Hey everyone.

I am only 19 but I have been suffering from endometriosis for almost three years. I was undiagnosed for 2.5 years. I finally had my laparoscopy in June and I have minimal endometriosis. By minimal, I mean the lesions, not the pain! I have been in terrible pain for years due to this.

I was started on continuous birth control pills after my surgery. I have switched doctors three times now because no one seems to want to listen to a 19 year old with minimal endo. I was bedridden until August when I started Lupron treatment.

It was great at first. No side effects and greatly reduced my pain so it could be controlled with 3 Ultram a day. Great compared to the narcotic painkillers I was taking before.

I am now on my 4th shot of 6 and not only am I miserable from side effects, the shot isn't effecting the amount of pain I am having. I have AWFUL short term memory loss to the point where I had to quit my job, vivid and weird dreams, extremely severe cramping, and frequent hot flashes. I also take 5mg norethindrone daily to curb the side effects.

My problem is that because I am 19, it is virtually impossible to find a doctor that will do the hysterectomy surgery on me. Everyone tells me I want kids (I definitely don't) and that I should stay on the Lupron. It's not working. It started with the first shot wearing off in three weeks. Next one wore off in 2.5, next one wore off in 2 weeks, and the most recent one didn't change my symptoms at ALL. I just want to stop the Lupron right now and get a hysterectomy!

Can anyone offer any advice? I'm at the end of my rope...

Also, I forgot to mention that my doctors will mo longer even prescribe me the Ultram. So I'm screwed.

Isn't it a better idea to get a hysterectomy now instead of waiting for the endo to grow and spread?

well a hysterectomy will not cure endo. It is possible to relieve you of your pain but it is not a promise. Do you know of any excision specilist in your area? Do your drs know that endo can have very little adhesions but cause alot of pain? I know how you feel, I am 25 and I am getting my hysterectomy on the 15th of dec but I have 2 children. Please think about this long and hard before you decide to have this done. You can never take it back. try talking with your dr again bring in some info because alot of gynos don't know much about this disease. we are all here dealing with the same issues so don't hesitate to ask question and or vent. you can private message me if you want. I hope you get some help and feel better.

Have they explored the possibility that you might have something else going on other than endo?

I had so much pain today that I had to leave work because I couldn't stand. I already took 4 ibuprofen and 3 Aleve this morning before work and it didn't do anything.

I don't know what's going on and nobody really wants to help me (doctors, etc., there are no specialists around here) so if the hysterectomy has a 5% chance even of making me feel better, I will do it. I don't care about kids. I don't want any.

My last gyno (that did my laparoscopy surgery, no cutting or anything, just looked) told me flat out that the endo can't be causing my pain because the lesions are so small. I switched doctors immediately.

2nd doctor put me on Lupron which I have no pain relief and lots of side effects from. I have extreme memory and balance issues from it.

I just want a hysterectomy but no one will listen to me. They just think I will want kids. I DON'T WANT KIDS!!!

try a gynocologic oncologist. i have heard that they are better the regular gynos when it comes to endo.

It's true that the hystorectomy wont cure endo. I was 28 when I had my hyst and I have 2 kids of my own, and I still wish I would have research it more to find an answer other than having a hyst. I am now going through all of this again, and my pain is far worse than it was before. I wish I knew that I would be going through this all again, I would have sought out a different treatment. I have learned that you need to find a endo specialist if possiible. There is a list of specialists in this forum. I know even if you don't have one near you, they may do a telephone consult. Research the Dr's in your area and see if anyone has extensive experience with endo. I have heard people mention fertility specialist and/or gyno oncologist may be able to help.

I am so sorry that you are going through this at such a young age. I can't tell you that you do or do not want kids, but I know that what I thought I wanted at 19 is much different than what I found I wanted later in life.

I know for me that when I was told at 28 that I needed to have a hsyt to get rid of my pain, my response was where do I sign up. I was in so much pain everyday that I didn't care what it was, if I was told it would help, I wanted to do it. I reget that today, that I didn't research it more. My Dr. didn't even offer lupron to me, and didn't tell me that I had sever endo until after he removed my ovaries, my 3rd surgury. I really wish that I would have researched all of the possibilities before agreeing to surgury. It was my fault that I didn't get a second opinion. I think it is great that you are continuing to look for an answer, and a Dr. that can help you. Don't give up, you will find someone.

Keep us informed on your progress, I hope you find a solution soon!

Thank you for all of your kind replies, I really appreciate them. I am just completely frustrated!

This January I am going to finally be health insurance. It will open a door for me because practically everyone takes that insurance. I won't have to deal with referrals and insurance not paying.

For my laparoscopy, I found out after the surgery that they only covered half! So I am glad I will have better insurance because I really need it!

I am so sorry you are dealing with so much pain and frustration! Too many of us have walked a very similar road and my goes out to you!

First, as others have mentioned, you need to be very aware that a hysterectomy not only doesn't cure endometriosis, it can also open up a whole can of other issues. There are a multitude of side effects to a hysterectomy from physical to emotional. Just take a look at our specialty forums to get a peek into the potential problems: sexual dysfunction, adhesions, bladder matters, pelvic floor issues, hormonal imbalance, chronic pain, nerve entrapment, continued endometriosis concerns, and more.

Fertility concerns definitely need to be considered, especially with someone your age. While you feel that you do not want children now, your feelings may change over the years. We change as we age. Many of us changed our minds about having children as we found the right partner, our life situation changed, we came in contact with a baby that opened up a desire we didn't know existed...

And many, many ladies who have felt that losing their fertility would not a problem--just end this pain--found that it was a problem down the road. We have thread after thread on the site posted by women who had never even wanted kids so why were they grieving now? Grandmothers with no desire for a baby post that their heart is breaking because they can no longer conceive. I was one who thought I would be fine. After all, I was 25, happily married, and had two boys. Six years later, completely out of the blue, I was slammed with the loss of my fertility. One thing that can happen for those of us who are younger when we have a hysterectomy is that our peers start having babies and we get left out. Holding their babies stirs up a longing deep in our hearts we didn't know existed.

Instead of a hysterectomy, I would recommend that you seriously consider finding an endometriosis specialist. I realize this can be an expensive route that requires traveling--been there, done that--but it can be very worth it!

Based on my own experience--a hysterectomy not curing the endometriosis and opening the door to a whole host of new health issues because of surgical complications--I would never recommend a hysterectomy for a 19 year old women with minimal endometriosis unless she has undergone a complete examination and surgery with an endometriosis specialist.

Remember, removing the uterus may not even stop any pain. The uterus is not the problem when it comes to endometriosis. The problem is the endometriosis itself and where it is implanted. The key for treating this condition is the skillful removal of the actual endometriosis implants. If the endo remains, so do the symptoms. In fact, the symptoms can increase because of adhesion formation, surgical risks, hormonal problems, the remaining endometriosis, and more.

My best advice for you is to keep a very detailed symptom dairy. You might find using ReliefInsite’s online pain diary helpful.

Then, look for a doctor who will listen and work with you. Again, your best choice is going to be an endometriosis specialist. You may find one who will be willing to work with you on the financial side of things. Or you can do as many of us have done and file an appeal with your insurance company for extended coverage and benefits for the specialist.

If do not feel you can pursue the endo specialist route, find a reproductive endocrinologist or gynecological oncologist. These types of doctors can be knowledgeable and skilled with treating endometriosis, more so than a general OB/GYN. Other surgical choices could include gynecological surgeons who are trained in minimally invasive surgery.

Besides Lupron, you could consider an aromatase inhibitor. Some women are finding this newer treatment option successful. Other choices could be Depo Provera, pain management with a pain specialist, excision of the actual endometriosis, nutritional therapy, or even non-conventional treatments such as acupuncture, chiropractic care, massage, physical therapy, and more. (http://www.endometriosis.org/treatment.html)

What ever you do, don't give up! It is important that you find a medical team you trust who will work with you as this condition is one that can go with you all through your life. Additionally, those of us with endometriosis also tend to have a whole host of other health issues so it is vital that we have a team in place to work with us as any of these issues creep to the forefront.

in there and know that we are in your corner!