endometreosis

[Anonymous]

Anonymous wrote:Hi,

I had one IUI and 3 IVF cycles with unexplained infertility and 2 more IVF cycles while I was diagnosed with severe endometreosis & fibriods. Six years later, I became a mom via surrogacy with help from a family member. My most recent RE recommended a myomectomy to remove fibriods that other REs thought were too small to make a difference. We were going to do a FET cycle next month but the ultrasound shows there's another fibroid or polyp... *sigh*
I'm told this disease (endometreosis) has no cure. On the bright side the oncologist who removed the fibriods also removed lots of scar tissues caused by endo, relieving some of the constipation I was having.

My story also. Some are able to get pregnant with this, but others, no.

[Anonymous]

Yes, had a laparoscopy in June and removed a small endometrioma from one ovary and a little bit of it from the other one.

Did one IVF the following March, and had twins.

[Anonymous]

I had two laparoscopies - one in 2005 for diagnosis and again in 2009, due to the onset of pain and upon the recommendation of the RE prior to beginning IVF. Between the two surgeries, I was on Depot Lupron for approximately 10 months and normal BCP for another year or so. I think we tried for about a year before we sought help.

After the 2009 surgery, I became pregnant with my first without IVF (approximately 2 weeks following surgery).

I had my son in December 2009 and nursed for about a year, hoping to keep the endo from recurring during that time period. Once I was finished with breast feeding, I had the Mirena IUD placed in July 2011 and immediately developed a tennis ball sized cyst. My regular OB-GYN threw BCPs at me, which did nothing to alleviate the cyst. Finally, I sought the advice of a doctor at the Duke Center for endometriosis. She prescribed norethindrone which caused the cyst to dissipate on its own without surgery.

The IUD has been wonderful, but I am now looking at potential surgery due to pain recurrence and prior to possibly attempting a second pregnancy.

The only advice I can offer is to seek a specialist in this area. The doctors in this area, unfortunately, are not versed in the treatment for this particular condition.

[Anonymous]

My story:

Had *some* symptoms of endo before going on BCP at 18, but was never diagnosed because the symptoms were "normal" for women in my family (turns out every single f'ing woman in my family has endo, but none were diagnosed until I was). BCP kept it at bay until I was about 30, when I started getting sharp pains around the middle of my cycle. This pain increased in severity when I went off BCP to TTC. Ultrasounds and early tests all came up negative for growths.

After 12 cycles of nothing, I had a lap and an HSG (in the same procedure) and discovered that endo had blocked BOTH of my tubes. The HSG was able to clear one tube. My doctor gave me three cycles to get pregnant naturally and then advised starting IVF because she was afraid that my endo would re-grow aggressively and I would lose my remaining tube.

I got pregnant on the first cycle after my lap.

I had hoped that EBFing would keep the endo at bay, but no such luck. My pain and my period returned at 5 weeks postpartum and I went on an extremely high dose of progesterin to manage my pain and preserve my fertility. My doctor has advised having our children as close together as we feel comfortable to capture what little fertility I have left. She will perform an HSG as soon as we are ready to start trying again.

My doctor, btw, who is exceptionally WONDERFUL, is Cherie Marfori at GW MFA.

[Anonymous]

Anonymous wrote:I have posted about this here on these boards before- I have stage IV endometriosis and did a LOT of research. Essentially the best way to treat this is to find what people call "true" endometriosis doctors. Not normal OB/GYN's, not a gynecologist oncologist or whatever they are called, definitely not an RE. There are doctors out there who do endometriosis ONLY. None of these doctors are in the DC area.

One of the above posters mentioned Dr. Seckin, he is one of them. Dr. Sinervo at the CEC in Atlanta is another one who is fabulous. (Google him, their website will give you a ton of good information). Most of these doctors will not take insurance - they will work with your company to submit receipts after the fact but you are on the hook for it, ultimately. I had no out of network coverage so this was a big deal to me. I ultimately traveled to see Dr. Patrick Yeung after someone on this board gave me his information. At the time he was with Duke in NC and is now in St. Louis at St. Louis University, where he runs a whole center for endometriosis.

Anyway, I could not have been happier with my decision and if I ever need surgery again, I will go back to him. He did take my insurance at the time but I am not sure if the move to STL changed that. I had to travel to him once for an easy consult, and once again for the outpatient surgery (stayed in a hotel). He basically went in not knowing what he would find, found a ton of the endo, cut it all out, and that was that. I was totally fine up and walking around two days later, was at work 7 days after surgery.


In the three cycles I had post surgery, I got pregnant twice. Once ended in a chemical pregnancy and the next one ended in my now 12 month old! This was after a long year of other interventions that did not result in a pregnancy, including another laparascopic surgery by a respected DC ob/gyn who was not a true endo specialist. My advice, go right to the best and get this taken care of if you think you have it.

Hi, I am the OP that recommended Dr.Yeung to you several years ago. I just wanted to say that I remember corresponding w/you and am so happy to read about your 12month old. Many congratulations and best wishes.

[Anonymous]

We were quite lucky. I had an exploratory lap for a cyst and severe pain I was having. Dr. did an HSG and got rid of the existing endo that was described as "severe and diffuse." Told me that we basically had a six month window to try and get pregnant. We conceived naturally during my second cycle after the lap. Being pregnant is the best I have felt in years, but like a previous poster, the pain came back relatively quickly postpartum. Good luck!

[Anonymous]

Alinea wrote:
All the ladies who got pregnant after a lap, how old were you when it happened?

I was 28.

[Anonymous]

Alinea wrote:

Anonymous wrote:

Alinea wrote:
All the ladies who got pregnant after a lap, how old were you when it happened?

I was 28.

You were young. Glad it workd out for you.

I was 31.

[Anonymous]

Thanks for all of the information everyone. Although I am not the original poster, I was wondering if any of you have had excision surgery via the Da Vinci method (a robotic-assisted surgery, as I understand it) that limits the incision site to one and makes the excision sites more exacting.

I am unfortunately, in immense pain and have the opportunity for the regular 3 site excision surgery on 8/13 or I can wait until 8/26 for the Da Vinci method. Is it worth waiting for, in your opinion?

Thanks!

[Anonymous]

I have no personal experience with the Da Vinci method of excision. I would say that as long as you are a.) having the endo excised and not ablated and b.) your surgeon is a skilled endo surgeon that you would be in good hands either way.

Of course limiting the incisions to just one is nice if it can be done. I have 3 incisions.