Endo, Adeno....scared, worried & in pain

Hello Everyone

I am new to this forum and am really hoping to get some support and answers to some difficult questions.

I am 42 and have had painful periods all of my life. I have had the same Dr. for 18 years....each time I complained about my periods being painful I was offered painkillers or antidepressants.
Finally my Dr. sent me for an ultrasound in February and I was told I had Endo....I was also sent to a OBGYN for a uterine biopsy, then I had a cystoscopy and a colonoscopy to rule out any other problems since I was now bleeding rectally and having to use the bathroom every half hour. I felt as if I was falling apart.

Over the last few months I have tried Birth Control pills back to back but the pain was getting worse...finally after waiting 3 mths to see a specialist I was diagnosed with Adeno as well. I have been offered a Lap with Laser to cut adhesions and burn them away and also to cut the nerves to the uterus to ease the pain. I also have a cyst on my ovaries and was diagnosed with Polycystic Ovarian Disease in my 20's. I was told if this does not relieve my pain I am to have a Hysterectomy.

My question is this......I feel I am in agony...I am unable to work and fear loosing my job if I dont take care of this right away. That means I will loose my car, home, everything! I dont want to suffer one more day! I am considering calling my Dr. and asking her to please do a Hysterectomy NOW with the laser and get it all done on one operation. Am I crazy.......???? Having a lap is not going to relieve the clotting periods and heavy uterus that is causing me the urinary problems...it may not cure the pain either.
I am in constant pain every single day and it is killing me slowly.

If anyone has had a similar experience please let me know....I dont have a lot of time but am very sure this is what I want. I have talked it over with my Husband who is very supportive and sisters and family too. I just feel it is my only option to relieve the extreme pain and get me back to the wonderful energetic person I used to be.

Hi Kat and welcome to Hystersisters

I am so sorry to hear that you are in so much pain. I can understand why you might think that the answer is a hyst ... and that all your pain will be gone. The sad part is, there is no guarantee that you'll be endo-free forever even after a hyst and ovary removal. I wish a hyst was the cure for endo ... and for some gals it is. But then there are others who have recurrances despite all the best efforts of their docs. So you are wise to be asking questions and doing your research before you take this step. Here is a link to the Resources area of Hystersisters where we have links to some other great resources on endo and adeno. I hope these will be helpful.

Links for Endo and Adeno Resources

You say the endo was diagnosed after an ultrasound? It is my understanding that the only way endo can be diagnosed positively is via a laparoscopy ... your gyn actually has to be able to "see" the endometriosis. Adeno is also very difficult to diagnose. Many ladies don't even know they have it until after their hysts when the pathology report shows they had adeno. Sometimes it can be diagnosed via MRI, but this test is pretty expensive so not all gyns will order it.

I know you are VERY anxious for immediate relief. But I think you need to take this one step at a time. My opinion is ... you need the lap procedure to get an accurate diagnosis of endo. But I think you should get a second opinion from another gyn before you consent to ANY surgical procedure. There are risks with any surgery, even a lap, so you want to be sure that this is a reasonable approach at this time. A second opinion will help confirm this.

In the end, this is your decision and only you will have to live with your decision - whether that is a hyst immediately or something else. I truly understand your desire to get your life back. Many of us have felt that way too. But a hyst is major surgery, there is no turning back. For many of us, a hyst is a last resort after most other reasonable options have been tried and failed. I know you've been on bc pills and that doesn't seem to be working. But perhaps a lap with laser removal of endo and adhesions will bring good relief, even if only temporary.

Whatever you decide, we'll do our best to provide support. This truly is your decision. And I know it's a hard one. Please keep us posted on what you decide. Sending gentle hugs your way.

Beth

Your story is a lot like mine.
I was sent to five kinds of doctors.
My Doctor made me ask for a Hyst.
"Well, what are we going to do about it?" the Doc says.
"Remove my uterus and left ovary" says me.
"You mean a Hysterectomy?" he says.
"Yes, take it out"
"You mean you want a Hysterectomy?"
"You're going to make me say 'that' word arn't you"
" . . . ... ..."
"Yes! I want a Hysterectomy!"
Then, he jumped into action>
I waited for my next period for the best chance to save my right ovary, then scheduled.

I can't believe how much pain I was in, now that I'm pain free.