For those who have Endo and did IVF

[endo-freak]

I'm new to these boards and am in the process of educating myself on IVF. I have stage 4 endo and have done 2 IUI's, both failed.

My question for those of you with the severe type, how did the meds affect your endo?? Did it have to be called off? I'm wondering because just doing the 2 IUI's wreaked havoc on it and I'm worried about starting the IVF process only to have the meds make the endo explode on my insides.

I know it won't literally explode, but you understand what I mean.

TIA for all the advice.

[webgirl]

Hi,

I too have endo. My pain was so pain we did a lap and it helped it a little but 2 months later the cramps continued. We tried IUI's too and failed. The meds really never affected me and we had a postponement in the IVF process because of my uterine lining being too thin at the time so we later did FET. Thank goodness we for that!!

We finally got a BFP a few weeks ago and my second blood work came back today with a whopping 2500, which is good news.

I totally understand, what you're going through and good luck. Make sure you ask your doctor and if you have any support groups in your area also check them out.... No one knows your body like you do!~

[hrobinson]

Hello!!! I will try to keep my story brief, though it is very long. I had SEVERE endo. I actually traveled to Oregon (from Texas) to have a specialist remove my endo. We went there because we were afraid the endo had spread to my diaphram and lungs. Well, part of that was true. It was on my diaphram (they removed 1/3 of the diaphram), but it was also on my bowels, uterus, abdomen, appendix, ovaries etc. Dr. actually said it was the worst endo he had ever seen. However, he felt he got it all and I should get pregnant immediately.
Unfortunatley that didn't happen and I had IVF done. I must say the first time we did IVF there was no endo present and I got my BFP first try. YIPPEEE!!! We have a beautiful daughter.
However, when she was 1 we went back to do IVF again, and I was told the endo was back. So, we put it off a year (for other reasons than just the endo). Came back a year later and the endo was worse, which I could have told them that. Anyhow, they suggested I wait another year to do IVF. WE chose not to wait, but got a BFN
When I spoke with my DR about why we got the negative he said it had nothing to do with the endo. he said the only thing the endo does is affect egg quantity. I didn't have any problems producing eggs. So, we will hopefully be doing a FET in June.
Anyhow, I wouldn't say the IVF drugs affected my endo. I just think that unfortunatley it is a horrible disease that so many of us are "stuck" with. There are things we can do to make it better, but I don't think it will ever go away.

Please feel free to pm me any time. I wish you the best of luck in your journey.

-Heather-

[endo-freak]

Thank you both so much for replying. I am so glad to hear the IVF drugs don't hinder the process. That was my biggest fear. And of course I'll ask my doctor all these quesions. But since I have no clue when this is all going to start I'm trying to get educated.

My fears have been relieved. I thank you for that.

With my first lap is wasn't severe at all. She did have to burn off a few areas but I was in and out in a half hour. She also found it on my bowels (felt like I was passing a set of steak knives ) on my appendix and my bladder. (and everywhere inbetween) She didn't touch those areas as she was afraid of doing more damage. So then we started ttc on our own for a few months after that and nada, then she gave me Clomid for 2 months and that's when my endo went to stage 4. By the end of the second month on it my left ovary hurt so bad I couldn't sit up. I had to lay on my right side and that didn't even relieve the pain. So I called my doctor and she had me do an u/s and that's when they found the 2 cysts that were wreaking havoc in there.

So then she sent me to an RE and she did a total work up and had me in for surgery in 2 weeks. I told her I couldn't go through that pain the next month. And I have a high tolerance for pain. I think all women with endo have a high tolerance for pain!! The RE even found that I had a uterine septum so she fixed that, removed the endo from my bowels, bladder and ended up removing my appendix because it was covered in it and was becoming deformed. A 2 hour surgery lasted for 5! I was in pretty bad shape when I woke up.

So after I healed we did the 2 failed IUI's and now I am back on the pill - continuosly - no period - and I'm waiting for our ins to change and hope to God they cover at least one IVF. We don't have $15,000 laying around waiting to be spent!

Heather,

I will probably take you up on the offer of advice. Thank you!!

[kalen]

Hi Endo-Freak
Don't worry I will be an endo-freak with you. Kind of a long story but here it is and if it helps someone else feel better about their situation then thats ok. This past Feb I woke up in the middle of the night with crazy pain so bad the hubby wanted to go to the ER. I thought it was just really bad gas or something. Went to the hospital the next day and they found a cyst on my left ovary the size of a canteloupe(no exaggeration)There really was no other option but for it all to come out-cyst and ovary. At the time of surgery they said my right ovary was also as big as a grapefruit but of course in surgery they weren't going to just remove it without my consent. So after the first surgery I was referred to Boston IVF because my ob/gyn said I was too complex of a case for her. There they told me that there would really be no way to get eggs retrieved unless they removed this other cyst because of the possibility of it rupturing or other complications. So end of September i was back in surgery. They could not gaurentee while under surgery that they could save the ovary so of course I was freaking out about that. But all went amazing good-they took the cyst off and my one and only ovary was saved. Thats when I was officially labeled with stage 4 endo. They then put me on BCP for a couple of months so that the ovary could heal and then I could go right into trying IVF. So after a well deserved vacation the beginning of December in the Carribean (knowing the road we had ahead of us)and finishing up my last pill pack- I will be taking my last pill on Sunday- and starting the injections either Dec 11 or 12th. Sometime last week I started to get an achy feeling around my ovary area so now I am freaking out about that, but hopefully its just pre period cramps. I am very hopeful but constantly have nightmarish thoughts about never being able to have a child on my own. I wish I had done a lot of things differently,taken better care of myself over the years,not being so selfish about starting a family earlier, but I MUST be positive its my only option and I can't change anything in the past. I'm very glad to have found this website. It really helps to stay positive. My husband is not perfect but with all of this he has been perfect. I sometimes feel guilty he got "stuck" with this situation. Nothing some therapy sessions won't help me get through!!! We are going to rock this IVF and we will be parents. Anyways, please feel free to email me with any thoughts.

[webgirl]

Hi All,

These are some amazing stories. I thought my endo was bad... This is nothing compared to your pain. Best of Luck with each of you... I will say prayers for each of you..

By the way, hrobison: Where in Texas are you from? That's my home state.. I miss it terribly.

[hrobinson]

Endo-Freak-

I must say, I feel as if Clomid is the devil
I have always had bad periods, but never questioned them. I would mention to my dh every month that I thought they were getting worse and worse. Of course I just thought I was being a baby.
anyhow, after ttc for about 6 months I finally talked the DR into putting me on Clomid. He did, but did not monitor me. I will never forget in February calling his office because I could put my hand on my tummy and feel a throb. When I called and told him I thought something was wrong with my ovary, he told me I was just being a baby. Told me to take some asprin and move on. (People told me I even started walking weird...like I had a stick up my hiny). Anyhow, about 2 weeks later I went in for my annual and he was shocked and told me I had a cyst about the size of a softball. However, he just wanted to keep an eye on it. Two days later it ruptured and I was in emergency surgery.
I believe had I never gotten on the Clomid, I would still have two ovaries.
However, that was when we certainly discovered the endo. The funny thing was that I went to several dr before flying out to Oregon, and about 5 dr. all told me I was wasting my time. I DID NOT have endo.
How shocked they would all be.
Anyhow, while I know my endo is still growing I am learning to live with the pain. I am on BC which seems silly as I have no tubes so can't get pregnant.
Anyhow, sorry for the ramble. Just remember even though we have this ""yuck" to live with, we can still be mommies. I have proven that We are going to do a FET in June and I just know (hope) I will end up pregnant again.

Kalen- Wow, I feel so much like you do. I always feel guilty that my dh has to put up with all my endo junk. I just know he would love a house full of kids, but because of me it makes it so difficult. he is the best husband in the world, and a wonderful daddy, but I sometimes....quite frequently feel that he would be happier if he had a fertile woman.
You too have been through so much. You are such a brave woman. I am hoping that your pain is just pre period stuff. However, with all that you have been through, I know you always question every twinge.
I wish you the best of luck with your IVF. Keep the PMA!!!!

Hey Webgirl- I am not from Texas...as someone said today, I am an implant. I currently live near Wichita Falls. I do love it:)
DH is from the San Antonio, Austin area.
I am originally from Colorado....
Where at in Texas are you from?

[webgirl]

Hi,

I'm from San Antonio... and in a few years we will probably move back to be closer to family. Best wishes to you!

[endo-freak]

Hi hrobinson,

Thanks for the reply. That is so funny, well, not Ha-Ha funny, but ironic I guess. I had horrible cramps and this odd mid-abdomen pain with my periods since I got my first one at the ripe old age of 10. Yep, I was one of the unlucky ones. I remember it to this day how much pain I was in with my first period. Rolling on the couch trying everything to make the pain subside and nothing worked. It took a few months but my mom's friend who is a nurse gave her some Ibuprofen for me to try and that became my miracle drug.

But it wasn't until a year and a half ago that I went to my GYN for the endo. I suffered for 20 years with this pain (I was on the pill and it helped but never took it away completely) and DH and went home for my brothers wedding and I had just happened to have gotten my period the day before and the night of the rehearsal one of the bridesmaids - bless her heart - thought I should look into endo being the problem. So I investigated my symptoms and took them to my GYN and thank God she believed me and immediately put me on Lupron for 6 months.

Most wonderful 6 months of my life. No pain. Then I went back on the pill for another 6 and I had no pain for 1 full year. Oh my how sweet it was, then it came back. I knew it wouldn't last forever but one can hope right?! None of my doctors had ever taken the time to ask if my periods were painful. None. And I had always thought it was normal to be in that much pain since I had always had it I didn't know any different. My mother didn't even think it was odd. She does now...

I can't believe your doctor called you a baby! I would have smacked him if he had said that to me! I'm so sorry for that...I'm glad you are going for the IVF this summer. I wish we could and hope we can, but the financial side of it is what's really stopping me from persuing it any further. We've just gotten out of major debt and to go back into debt right now isn't an option. $15,000 would take too long to pay off.....I wonder how long it would take to save up for that much?