Post by mwilmot on Aug 30, 2006 15:21:25 GMT -5
Here is my long story - I am currently 30 years old. I have always had bad periods (painful with lots of bleeding) and finally went on birth control at 19. When I was 27 I went off the pill because my husband and I were ready to start trying for a family. About 6 months after going off the pill I started to get very painful periods again with lots of bleeding. I knew something was wrong but I just didn’t know what. I did research online and talked with my sisters (I have 5) and found out that one of my sisters had been dealing with endometriosis for a while. I finally had a name to associate my pain to. (In the meantime I had another sister that was diagnosed but she has no pain associated to hers). I talked to my gynecologist about controlling the pain and she would not give me any prescription pain pills because she said I was trying to get pregnant. I told her I may have endometriosis and she said to just get pregnant and things would be fine.
I thought I would try the natural route so I turned to an acupuncturist and did Chinese herbs. It helped the period pain minimally but did cure me of allergies, back pain, etc... but not endometriosis. I found a new gynecologist and he gave me a prescription pain killer but told me to continue to try the natural path first – which I was all for. I changed my diet and sought out a new acupuncturist who was specialized in endometriosis (I live near San Francisco so I have many options). The new acupuncturist was only able to help minimally too.
To add to the period pains, about 9 months ago I started to get bladder pains for about 2 weeks every month. After I was done peeing my bladder would contract and it would be excruciating…it was only from the end of my period until ovulation and then my bladder was ‘normal’ again (I also had to pee all of the time during these two weeks)
One period this summer I was so fed up with the pain (even with the pain pills it was still excruciating) so I went to my gynecologist and asked for a laparoscopy to officially diagnose the endometriosis and to take care of it. He was very easy to convince
On June 28th he did a laparoscopy and found out that my fallopian tubes were stuck to my uterus, they were also blocked, and he found that my intestines, uterus, and bladder were all stuck together from the endometriosis. He is not specialized so he was only able to free my fallopian tubes from my uterus and that was it.
He referred me to a fertility specialist, which when I called to ask about his experience in endometriosis was only to do IVF with patients with endometriosis. I then took to the internet to find someone else. I found Dr. Camran Nezhat who is specialized in endometriosis (www.nezhat.org located in Palo Alto, CA). He took all of my prior information and did some tests and said he would be happy to help me. – I highly recommend him.
On August 18th I had my second laparoscopy (5 incisions this time) and Dr. Nezhat was able to separate my organs, remove the endometriosis and also open my fallopian tubes. I was ecstatic that my dream to be a mother will finally come true. During surgery they checked on everything to ensure they got all of the endometriosis and found, through a bladder cystoscopy, that the endometriosis has moved into my bladder (just one more hurdle to go). He did not fix this during surgery for three reasons 1) he did not have consent and does nothing without it 2) he wants to shrink it so the part of the bladder that is removed is as little as possible and 3) he wants to have a urologist present. I go in on Tuesday to talk with him about my next surgery where part of my bladder will be removed. The good thing is that is a forgiving organ and will ‘stretch’ back into shape! They put me on Lupron and I’m also back to a dietary change to help with the control of the endometriosis inside my bladder. I had refused Lupron in the past but since it is only for a few months I agreed to it. I’m going to shoot for a November surgery.
All in all it could have been worse and I’m happy with the outcome so far. The great news is that the endometriosis was not on my ovaries and they are functioning correctly and I ovulate every month so hopefully in about a year I’ll be healed and ready to try to conceive again. I also cannot wait to see how the pain has gone down.
This is a long post so bravo to anyone who reads it completely Hopefully, I can bring some help or insight to other users that have a similar issue.
I thought I would try the natural route so I turned to an acupuncturist and did Chinese herbs. It helped the period pain minimally but did cure me of allergies, back pain, etc... but not endometriosis. I found a new gynecologist and he gave me a prescription pain killer but told me to continue to try the natural path first – which I was all for. I changed my diet and sought out a new acupuncturist who was specialized in endometriosis (I live near San Francisco so I have many options). The new acupuncturist was only able to help minimally too.
To add to the period pains, about 9 months ago I started to get bladder pains for about 2 weeks every month. After I was done peeing my bladder would contract and it would be excruciating…it was only from the end of my period until ovulation and then my bladder was ‘normal’ again (I also had to pee all of the time during these two weeks)
One period this summer I was so fed up with the pain (even with the pain pills it was still excruciating) so I went to my gynecologist and asked for a laparoscopy to officially diagnose the endometriosis and to take care of it. He was very easy to convince
On June 28th he did a laparoscopy and found out that my fallopian tubes were stuck to my uterus, they were also blocked, and he found that my intestines, uterus, and bladder were all stuck together from the endometriosis. He is not specialized so he was only able to free my fallopian tubes from my uterus and that was it.
He referred me to a fertility specialist, which when I called to ask about his experience in endometriosis was only to do IVF with patients with endometriosis. I then took to the internet to find someone else. I found Dr. Camran Nezhat who is specialized in endometriosis (www.nezhat.org located in Palo Alto, CA). He took all of my prior information and did some tests and said he would be happy to help me. – I highly recommend him.
On August 18th I had my second laparoscopy (5 incisions this time) and Dr. Nezhat was able to separate my organs, remove the endometriosis and also open my fallopian tubes. I was ecstatic that my dream to be a mother will finally come true. During surgery they checked on everything to ensure they got all of the endometriosis and found, through a bladder cystoscopy, that the endometriosis has moved into my bladder (just one more hurdle to go). He did not fix this during surgery for three reasons 1) he did not have consent and does nothing without it 2) he wants to shrink it so the part of the bladder that is removed is as little as possible and 3) he wants to have a urologist present. I go in on Tuesday to talk with him about my next surgery where part of my bladder will be removed. The good thing is that is a forgiving organ and will ‘stretch’ back into shape! They put me on Lupron and I’m also back to a dietary change to help with the control of the endometriosis inside my bladder. I had refused Lupron in the past but since it is only for a few months I agreed to it. I’m going to shoot for a November surgery.
All in all it could have been worse and I’m happy with the outcome so far. The great news is that the endometriosis was not on my ovaries and they are functioning correctly and I ovulate every month so hopefully in about a year I’ll be healed and ready to try to conceive again. I also cannot wait to see how the pain has gone down.
This is a long post so bravo to anyone who reads it completely Hopefully, I can bring some help or insight to other users that have a similar issue.