Hysterectomy help

I have endometriosis and fibroids. My symptoms have gotten worse. I was also diagnosed with colitis; and have breast issues. I can't take hormones because of migraines and urinary problems.

I went to a gyn clinic at one hospital. I had a laparoscopy around 2006. It showed endometriosis. They did not treat it at the time. I don't know what stage it was or anything. They do not want to do any further surgery on me. They just said there are risks and because I'm under 40. They have full financial assistance.

I went to another hospital's clinic. They would do a hysterectomy. Not everything is covered by financial assistance there. I told the 1st hospital what this gyn clinic said. The 1st said to go to the 2nd hospital for the surgery.

I went to a 3rd hospital's clinic. The doctor said he would do it. I think it's a Robotic Total Laparoscopic Hysterectomy and SBO. I think the only thing not covered is anesthesia. He said the endo could make my bowel problems worse. Also, my breast doctor said a hysterectomy could help my breast issues.

I was scheduled for tomorrow, but I cancelled. I wasn't sure what to do. I know the 1st hospital won't do anything. The 3rd hospital's anesthesia will let me make monthly payments. I'm also worried about recovery time and missing work.

Thank you. I'm sorry if this it too long.

Hi Caeryn



I'm very sorry to hear about the issues you are dealing with. I think you're smart to have ventured out and gotten additional opinions. If you are still feeling uneasy and unsure and confused, perhaps you could look into yet another opinion.

This is way too serious to rush into surgery, especially when the first opinion was not to have surgery. The others who have offered opinions would have to access your full medical history in order to assess and give true and viable options. It's concerning that the first opinion was that surgery is too risky for you.

Certainly other aspects of this process are important, too, such as payment options and recovery time. It's good that you are being sure to have those questions answered as you consult with these medical professionals.

Again, very sorry to hear about your dilemma. I hope you are able to find someone you are comfortable and confident working with toward resolving your medical issues.

We are certainly glad you're here and we're supporting you no matter what you decide.

Thank you for responding.

I've had issues with the 1st clinic. I don't think they really take me seriously. When I went there, I said I didn't want birth control because of migraines. I even asked them about other less invasive surgeries. Like another laparoscopy or removing the fibroids. They won't even do those. They said they only remove fibroids if someone wants to get pregnant. They don't really want to do anything else for me. I think they meant surgery in general is risky. I've had surgeries before without any major issues.

I gave my records and medical info to the 2nd and 3rd clinics. So, they know about my history. They are the only ones who seemed to take me seriously.

My primary care doctor said endo can make my bowel issues worse. I can ask her about the surgery.

Keep exploring your options - I like starting with your primary care doc as she knows your medical situation and history the best. Maybe she can recommend someone for you to talk to.

(((Hugs)))

I'm not sure what other options are there. I don't have insurance. My options on where to go are limited.

The 3rd clinic doctor said a laparoscopy may not help. Like, if there is a lot of endo, it may be hard to get it all out. He also said an endometrial ablation may not help the pain.

I'm tired of the bad pain, nausea, bloating, heavy periods, and clotting. I think the colitis pain gets worse because of my endo/fibroids. I'd rather have the hysterectomy than have these symptoms all the time.

I can still talk to my primary care doctor. She cleared me for my foot surgery in 10/11. I think she would clear me for the hysterectomy.

Good luck! I would go to my regular doctor and then follow that advice.

Very understandable that you would want to be rid of the constant pain - that is not a good way to live. But, it sounds as if you might have to go by way of your primary doc from what you said. Good luck...

(((Hugs)))

I am sorry you are in a frustrating situation and wish I had some easy answers to share with you. I do agree that talking to your GP could help you with your decisions and might even open the door to some other options.

There are a few things you do want to know while making your decision. One, a hysterectomy is not a cure for endometriosis. The doctor at the third clinic was correct when stating that it could be hard to remove all the endometriosis. Many doctors are not able to recognize and remove all of the implants and thus pain and symptoms can continue. In my case, endometriosis was left on my bowel wall and it caused continued issues following my hysterectomy, including digestive problems that caused nausea, bloating, and pain.

Are you working with a neurologist or headache specialist for your migraines? If you could get those under control you might be able to try some alternative options. Even with migraines, you may be able to use the Mirena Coil as the hormone is released more locally than systemic. Check with your doctor.

In the meantime, keep a detailed symptom diary. This can help doctors see what you are going through and may allow them to be more helpful.

I know this can all be tough, especially since a hysterectomy won't necessarily solve all of your problems since you have endometriosis. But in there and keep working with your doctors to find the right solution for you.

Thank you for the responses.

I see a neurologist for my headaches. The Verapamil usually helps. I also take Riboflavin. My headaches are mostly under control. I also have medicine to stop headaches.

I'm not sure what else my primary care doc will do. She did say my endo/fibroids can cause some of my bowel issues. She would just refer me to a gyn doc. She is at the same hospital as the 1st gyn clinic.

Like I said, the 1st gyn clinic doesn't seem to want to do anything. I keep going there, and they won't really listen to me. Also, when they did the laparoscopy, they didn't take any biopsies.

I don't think I want to take any hormones for endo/fibroids. Mainly because of the side effects.

I decided to have the hysterectomy with the 3rd gynecologist. The surgery is scheduled for 3/5/12. He said he would try to remove as much endo he can. Since he is also removing my ovaries, would that stop the endo/fibroids issues?

Plus, my breast surgeon said a hysterectomy would help with my issues.

	Quote:
Originally Posted by Caeryn23 Since he is also removing my ovaries, would that stop the endo/fibroids issues?

Well, the fibroids should be removed with the uterus. If you have the complete uterus with cervix removed, then fibroids shouldn't be a problem regardless of the ovaries.

Endometriosis is another issues. Some doctors do believe that no ovaries equals no estrogen which should equal no endometriosis. But it isn't that simple. For one, endometriosis can create its own supply of estrogen, so if any endo is missed you can continue to have issues even without ovaries. The key is the skillful removal of all of the endometriosis implants, something that is very difficult and can require the skills of a specialist.

That said, sometimes we are not able to make the most optimal decision for our situation. But knowing the big picture can still help us with our decision, and even prepare us for the future. I did have my hysterectomy with a local OB/GYN. I knew he would not remove all of my endometriosis so there was a possibility that I could to deal with endometriosis issues. And I did. When my symptoms were finally too much, I then made my way to an endometriosis specialist for surgery and have done very well every since.

Because you have issues with migraines, be sure to let your neurologist know you are having your ovaries removed. That could impact your migraines.

I wish you well! in there!