25, no kids, just diagnosed with stage IV endometriosis-devastated

[Anonymous]

Hi,

I am 25 years old and have been married for one year. I have always had terrible menstrual cramps and started to have more pain recently, so was diagnosed with a very large ovarian cyst. Yesterday, they went to remove the cyst laparascopically via emergency surgery and foudn that I actually have stage 4 endometriosis. The doctor said that it would be difficult for me to conceive and that if I wanted to have children, my best bet is to start trying immediately because it will be easier now with my age. There may have been another reason why I am supposed to start trying now and not wait, but I can't remember. (I am all drugged up from surgery).

I really do not know what to do. We had planned on waiting about 4 more years before we were going to start trying. My husband is older (31) but neither one of us are ready - emotionally or as financially as we'd like - to have a baby right now. But I don't want to put it off two years and then not be able to do it ever. I also really do not want to have to take fertility drugs if that is possible. I feel like there is no good decision right now.

Has anyone been in this situation? I'm so confused and upset and would love to hear any experiences or first hand knowledge. Thank you.

[Anonymous]

So sorry to hear the news. I don't know much about it, but is it possible to freeze your eggs so you don't feel stressed about not being able to conceive later?

[Anonymous]

Stage IV diagnosed at 29. IVF was our only option because my tubes were so severly impacted (and my hormone levels never were where they needed to be without drugs anyways).

Are you under the care of an RE? If you do not want to get pregnant immediately, I would recommend Rifka at Columbia. He can give you options and timelines (and he will also do GYN for women who have reproductive issues). I do know of stage IV sufferers who keep the disease in check with a Mirena IUD.

I am so sorry you are going through this. I found the diagnosis devastating at first. But then I felt a lot of relief to finally know what was wrong with me (I had major bladder and g.i. issues also linked to the disease).

You aren't alone. And it is better to know sooner rather than later, though it doesn't feel like it right now.

[Anonymous]

11:46 here -also be prepared that if you did not have the lap done by an RE, if you go to see one, they may want to do another to completely assess the damage, esp. because you want to delay things a bit, if possible.

[Anonymous]

I'm so sorry about your diagnosis. But it's good that you found out now vs. years from now when you may not have as many options.

I was diagnosed with stage III at 34 (after going through a few unsuccessful rounds of IVF) - but I wasn't having symptoms (aside from IF).

If you aren't ready to TTC right now, ask your dr about going on BCPs to slow the endo down (I think Lupron Depot is another option, but the side effects can be brutal - probably not a good option for long-term). I'd also talk to an RE (reproductive endocrinologist) about your options for now vs. future - they will know WAY more than an OB.

Best of luck.

[Anonymous]

Given that it was an emergency surgery, did the doctor remove all of the endo lesions/cysts? If so, then now is a really great time to try (if you were ready)...

[Anonymous]

Did they remove the ovary?

I had a huge ovarian cyst removed when I was 16. The doctor took out the whole ovary it was so damaged/cyst was so tight.

Fortunately, my other ovary released eggs and I was able to conceive. Ironically, both of my children were conceived from the right egg - the ovary that was supposedly removed b/c of the cyst.

There is hope. You may want to get a 2nd opinion too.

[Anonymous]

To 11:46 do you mind stating what your symptoms were in terms or bladder and GI issues and any other symptoms you had. I have been having some issues in this area and am curious. Thanks.

[Anonymous]

Anonymous wrote:To 11:46 do you mind stating what your symptoms were in terms or bladder and GI issues and any other symptoms you had. I have been having some issues in this area and am curious. Thanks.

bladder -need to urinate constantly, but feeling unable to empty bladder.

g.i. -diarrhea at the onset of menstruation...but as the endo on my bowels got worse, it would start earlier and earlier.

Many people with later stage endo have these issues...surgery provided immense relief.

Other symptoms -spotting that was thick, the color of hot chocolate or sometimes motor oil that would start up to a week before menstruation.

Extremely short cycles (20 days, ovulating around day 12-13).

Back pain from adhesions -I thought I had pulled my back lifting something years ago. It wasn't awful pain, more like annoying soreness.

Endometriomas visible during transvaginal ultrasounds.

Long, heavy periods...sometimes extremely painful, sometimes tolerable.

Inability to get pregnant (tubes were blocked/damaged -required IVF).

[Anonymous]

OP here, thank you for all of the feedback.

I will look into freezing eggs.

I have not seen an RE. Thank you for the recommendation. One of the locations of Columbia is right near us actually so I will follow up on that. What should I expect to be covered through insurance vs. paying out of pocket?

As far as I know, they did remove all of the lesions and cysts (I THINK...) but they definitely did not remove ovaries.

If we did IVF, how much does that cost? I'm sorry, I probably sound silly, I just have zero idea about any of this and I want to have some idea before I proceed.

[Anonymous]

No need to feel silly. I guess it depends on your clinic and the plans that they offer. I have investigated the pricing to see if my clinic is really expensive or in the ballpark and it seems that they range between $10K and $20K. Of course that depends on your situation and what type of IVF treatment you choose or qualify for. Now some insurance companies give you coverage and some don't. Mine does not. There is a new mandate in the state of Maryland regarding coverage for IVF but there are restrictions like the company has to have over 50 employees, etc. So, also make sure to look into what your insurance covers. Good luck!

[Anonymous]

Thanks. I just checked insurance website. It says that "Infertility Studies" are covered with a $25 copay and "Artificial Insemination" is also covered with $25 copay in office, and we have to pay 10% if it is in the hospital. IVF, infertility drugs, and other infertility treatments are not covered. Not sure if this is good or bad. Obviously bad about IVF but not sure about the rest etc.

[Anonymous]

OP, this is 11:46. Right now focus on the diagnostic stuff, and don't worry about IVF coverage. It sounds like your insurance will cover the diagnostics. If it comes to IVF down the road, and you or your husband are Feds, there are plans that will offer IVF coverage. Also, check during open season to see what other plans your employers offer.

In all honesty, I think going to an RE and having him or her confirm the diagnosis and the severity (GYNs and General Surgeons don't see endo every day) is the best thing you can do for yourself. If you and your DH are not ready to jump into parenthood yet, you can formulate a game plan.

FWIW -I ended up having to do IVF -but over the course of a few years, have been blessed with two wonderful children. I wouldn't pick this way to build a family if other doors hadn't been closed to me, but once you hold your baby in your arms, whether he/she was conceived via a fun frolick with DH or through IVF (and I can imagine adoptive parents would chime in and say they feel the same way about their adoptions), that all kind of fades to the background.


Good luck -it's a crappy diagnosis, but definitely does not have to be the end of dreams.