[Alice]

Hello, I'm new here. I'd like to share my story and ask for advice dealing with endo and infertility.

I was diagnosed a year ago with stage 4 endometriosis. I had severe pain for about a year before I ever went and saw a doctor. I thought my pain was normal because I had always had very painful, debilitating periods. One morning I woke up in excruciating pain and only realized that something was wrong because it was two weeks after my period and couldn’t be menstrual cramps.

I gathered the courage to make a doctor appointment. The doctor diagnosed me with an ovarian cyst and told me to take some Advil and come back in 6 weeks. Well, that didn't work and I ended up in the emergency room a few days later. The surgeon removed my appendix but did not diagnose my endo. The pain remained after the surgery and I had to deal with doctors who thought I was lying to get narcotic pain medicine.

Fast forward three months from my first doctor's appointment and I finally got an appointment with an obgyn who immediately ordered surgery and put me on birth control. I had been out of work since my first doctor appointment, as I was in too much pain even on the narcotics to sit in a chair.

I had been focusing on the pain and getting my life back, so fertility issues were far from my mind. It came as a shock when after the surgery the doctor told me that my tubes were shot and I wouldn't ever be able to conceive without IVF.

On one hand the surgery was successful in reducing my pain to a manageable level, but on the other I had lost something very precious and personal. As it turns out, I also lost my job because I had been sick for so long.

I am feeling relatively well after 9 horrible months of lupron treatments, despite the pain I still feel daily. I am much happier in my new job, even though I am constantly being reminded of my infertility issues as everyone seems to be having babies. Also, just about everyone has either commented on my lack of a child or asked when my husband and I are going to start a family. I can't really say "none of your business," so I put on a fake smile and make something up.

When I got my last lupron shot my doctor recommended I go and see a fertility specialist and get IVF done NOW because, according to her, the longer I wait the less likely it is that it will work. I have made an appointment three times and canceled it three times. I am scared of doctors as it is, without the added fear of the prospect of getting pregnant or (worse) having to deal with the procedure failing.

I am often down and I feel like I obsess far too much about this, and I would greatly appreciate any advice or words of wisdom, especially on what to do with my apparent inability to keep my appointment with the fertility specialist.

[futuremom2b]

Alice, you sound really funny! You even make jokes through this really stressful time!

I'm sorry about you having Endo, I too thought painful periods were normal, and what do you mean sex isn't painful to EVERYONE!
I have stage 3 endo and tubes are blocked went through 3 months of Lupron in 2005 and did IVF in 2007 and had a wonderful baby girl last Oct. We tried again with a FET, and had an MC which was the hardest thing I have ever had to go through.

I get so frustrated that we have to go to an RE and spend LOTS of money and put our bodies through all the shots and meds just to build our families, but thank God that there are options out there for us. How old are you if you don't mind me asking? Your doc. is right age makes a difference and the younger you are the better stats you have to having a baby.

I don't know what to say about you not going to the RE apt. your first apt. won't be difficult, they will try and get you scheduled and will educate you on your "plan" and the meds. You don't have to PICK their dates, you can listen and decide what month you WANT to do it (at least I can at my clinic). I love my RE and their office staff, they are so wonderful and know what we are going through.
My guess is that when you want a baby bad enough, you will keep that apt, and know that's what you need to do to hold that little one in your arms.
Hugs!

[cathyh]

I am understand the pain assoicated with this diseases. I was also afraid of IVF and cancelled a couple of appts. until it came done to a hystercomy or try IVF so I did two rounds of IVF and the second one worked. Dh and I wish we had done the IVF years ago instead of waiting 13 years.

Best of luck to you

Cathy

[katerina]

Alice, I am the same like you. I am terribly afraid of doctors. I was too diagnosed with endometrioma (blood filled cyst) on my left ovary a few month ago. My regular OBGYN wants me to have lap surgery, which I am terrifyed of. I have been trying to get pregnant for year, and nothing. Next week I am going to Stanford fertility clinic for a second opinion. I am hoping I don;t need to do a surgery, although I feel like this is my only choice. I too, get sad and frastrated at work when people are asking me when am I getting pregnant already, especially when the girl at my work got married at the same time last year and is already pregnant. I am really happy for her, but it physically hurts to not being able to be pregnant. I think you should go to a fertility clinic, you will feel so much better about yourself. I will let you know how my appt went.

[Bri01]

I am not sure what stage my endo is, although when I was originally diagnosed in 1999 it was spread all the way to my liver. I had a lap done in 9/99 and surgery to remove the endo scarring in 11/99. I lost my left ovary and tube in 12/01 and had a cyst removed off of my right ovary in 12/03.
My tube on the right side was blocked and IVF was our only option. I have a dd that is adopted(00) and decided to give IVF a try.
Last year in May we went through our IVF cycle and were lucky as it worked the first time. I now have a 9 1/2 month old ds.
This past tuesday I was refered to a GYN/ Oncologist as my issues have re-surfaced and after 8 months on 2 forms of BC, nothing works. I do not respond to Lupron as I have tried that several times prior. I am now facing a hysterectomy....and I am just glad that I decided to go through IVF. It was worth ....everything that comes with it.

[Alice]

Thank you all for your kind words. To answer your question, futuremom2b, I just turned 28. One thing I am definitely afraid of is that the fertility doctor will act like a used car salesman and try to sweep me up into scheduling everything when I'm not 100% sure I really want to get pregnant right now. I’d like to go get a second opinion on the risks of waiting a little, though, and it helps to hear it that it’s okay to say no, not yet. I better bring my husband; he is good at staring down used car salesmen.

We had been trying to get pregnant for about 4 years before I was diagnosed, and I knew something was wrong. I had just figured it was my husband and that all we’d have to do is go get him doctored up a bit and everything would be fine. Looking back, I really wish I had gone to the doctor back then. Had I gone then maybe my endo wouldn’t have been so advanced. My advice to all who have questions or suspicions: go see your doctor! If you’re not satisfied with their answer, see another one and another one. I had probably seen 7 or 8 doctors before I finally saw an obgyn. All one trip to the emergency room got me was a paper that had tips for what to do with “abdominal pain with uncertain cause.” Needless to say, that didn’t help very much.

[Alice]

Katerina, I feel your pain! Only today the gals in the office were joking that if I got pregnant now I could miss the end of our project (which wouldn’t be a bad thing—things aren’t going too well). Then they asked how long we’ve been married. When I tell them 5 years they looked shocked and asked if we were waiting. I said “Um, yeah, something like that.” They all assume we’re newlyweds because we have no children and I’m not pregnant. I don’t really want to tell the truth because it’s really none of their business. Sometimes I wish I could, though.

Katerina, I’ve had two laparoscopic surgeries and they really weren’t that bad. I was terrified too but it really gave me my life back. The one to clean up the endo went so well they were practically kicking me out of the hospital right after I woke up. I’d definitely say you should get your second opinion. I’ll be rooting for you! If you do decide to get the surgery, one point of advice is to talk to your anesthesiologist right before the procedure. After my first surgery I was very nauseous due to the anesthesia. I told this to the second guy and he was able to make it so it was much, much better.

[Alice]

Bri01, it’s unfortunate that you may have to go through a hysterectomy, but at least you have your child! I see waiting can have consequences. I’ve already lost most of one of my ovaries and I have a cyst in the other. I can’t imagine what it would be like to wait too long and lose all options of having a baby.

[futuremom2b]

Alice ~ I know from 30 to 34 the odds of a successful IVF are ABOUT THE SAME, with each year getting a bit harder, and after 34 getting MUCH harder.
There is a graph on line somewhere that really helped and I have it in a book somewhere.

It's such a hard decion because you just don't know the road that God has in plan for you (or any of us), I say just do what you feel in your heart is right.
Our RE isn't like used car sales man at all (if yours is I say switch), he just tells me the facts and what the plan will be and we call when we want to get on a "schedule" as they are really busy. Right now we don't know what we are going to do, after the MC, it's hard to get excited to do IVF again....
Good luck in your decison!

[Mama2Caden]

Just the perspective of a 37 year old. It seems like my life for the past 8 years has been about TTC. Anyhow, I did have the lap a few years ago for endo and my IUI's (3) were all failures. Our one IVF worked on the first try thank God. The rest is in my signature.

Just a personal perspective. For me, I wanted to cover everything I could and say in the end that I tried everything and it wasn't in the cards for us. Well it all worked out and to this day I don't regret anything I have done to get me pregnant. Now, of course this was my decision and I can live with that.

So I guess you would need to ask yourself what you really want and go with that. I think a second opinion is a good thing. I agree with futuremom2b in that the older we get the chances of conceiving go down even with inferility interventions. So you might be working on a clock. I loved my experience with IVF. I loved my clinic and the whole experience has taught me a lot about myself. That said, choosing your path is an individual decision and only you can decide what's best for you. Good luck with whatever decision you make.

[wally865]

Alice -

I was diagnosed with Stage 4 Endo about a year ago as well. I had the surgery in April 2008 and the endo had returned by June 2008.

I don't tell you this to scare you. I just want you to know how unpredictable life is. I certainly thought (wrongly though) things would be smooth after the surgery. When I found out the endo was back, I became deeply depressed and became OBSESSED with conceiving.

My husband and I were frantically trying to figure out a way to pay for IVF as the doctors told us that would be our best bet to conceive. It became too much!! I was overwhelmed.

I stepped back and looked at the situation. Yes, we want to be parents. However, we also want to be able to afford to take care of this baby we are trying so hard to conceive. It would have strapped us financially to go ahead with it.

So, we are waiting. We want to save some more and be happy with our careers. If God wants us to have a biological child, it will happen. I have to have FAITH

My point is this: Do not rush into something you are not comfortable with. It will only stress you and your husband.

You never know how things may change in the future. Focus on you and your health first.

[Alice]

Thanks, Wally. I'm a bit stressed about the whole thing. My endo never went away...the doctor said she could only remove so much without causing internal damage. I still deal with pain almost every day, particularly when I exercise or even sing (I'm in a community choir).

How much does IVF generally cost? I know it's a lot, and my inlaws have graciously offered to help pay for it. On one hand I hate taking money from anyone, even family, but on the other they said they would rather see us enjoy the money they leave us rather than leaving it to us after they are gone. There's no way we could pay for it on our own.