

Endo Diagnosis-long post (sorry in advance)

I'm desperate and in tears and need to talk to someone. I dont even know who will see this or what I'm looking for but I need to tell my story to anyone who might offer something beyond what I keep getting from others like "it's OK if you can't have kids, you'll save money." 

Here is my story: First and only known pregnancy ended ectopic just a mere 3 weeks ago. I was treated with methotrexate so I still have both my tubes. I've been having abnormal pain outside of what should be expected for this resolution. US last Monday confirmed  TWO 2.5 cm cysts on both my ovaries. Majorly terrifying considering what I've already been through. Doc thinks they are hemorrhagic cysts but there's a new symptom that has lead him down a new train of thought. Sex with my husband has been painful ever since. Sex NEVER been painful before. Doc says the cysts should NOT be causing that pain. He strongly suspects endometriosis now which would explain the painful sex and the ectopic pregnancy since my tubes must be garbage now. He wants me to do the surgery to confirm that it's endo. I'm 30 (will be in Sept) which means I'm flat-out of time for children I so desperately want. I've never been on birth control. 

I've dug deep into the clinical consequences of endometriosis and the symptoms. Looking back, I never really thought my periods were that bad. Maybe heavy bleeding the first 2 days and 2x-3x they would make me vomit. Never pain so extreme it disrupted my life. 

But not only can I not have a uterine pregnancy, Im pretty much guaranteed infertility since the miscarriage rates with endo are crazy high. Like almost all ladies with endo miscarry multiple times from the medical journals I've read. 

I'm drowning in anguish at the realization that I truly will never have children. I didnt realize never being on birth control would ruin my life like this. 

My doctor told me this morning that even if we did the excision to remove the lesions, they would likely grow back with in 6 months to a year and I was like "what's the $#*& point then?!" I'll never enjoy sex with my husband again which will eventually crumble my marriage. I wasn't fortunate enough to get banged young and pop out kids when I was fertile so I'm now a 30 year old geriatric with no children. Also need to mention I don't have $15k lying around to "just do IVF". I dont see a way forward. I know technically there is a very very very small sector of women with endometriosis who have children but from all the medical articles I've read and after talking to my doctor, the rates of conceiving are dismally low and the rates of miscarriage are incredibly high (like 50% in most cases). It won't happen for me and those are just numbers.

Did anyone out there find a way to move on? We're you able to just say, "I will never be a mother and thats ok." How did you do it?

If you read all this, blessings to you. This was a long one!

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I feel for you. Endometriosis is a really cruel disease. All I can say is don’t give up hope. 1/2 of people with endometriosis have difficulty getting pregnant. Not everyone. Surgery could increase your chances of pregnancy and should be fully covered by insurance!

As for IVF, it seems like a ridiculous amount of money to pay. I also don’t have 15-30k lying around to move forward with it, but am considering it as one of my options. There are grants, loans, programs, and other ways to get pregnant with fertility treatments besides IVF. Do more research, weigh your options, and don’t give up hope if having children is a priority for you! 30 is young, and I’m sure a doctor would be really willing to help you.


Thank you for responding. 

I hope and pray your process with IVF is fruitful and gives you a miracle. 

I waited too long for children and this is my consequence. The longest we should have waited was when I was 27 but we just weren't ready and now biology is definitley punishing me for it. Unfortunately, I have not read a single story from a 30 year old who successfully had a pregnancy with endo. So I have to assume my age is a huge roadblock. 

Even if I have the surgery, my doctor already told me the likelihood of it growing back in 6 months is high. Not sure if you have experience with laparoscopies and the recurrence rate?

I love my husband (obviously) and sex makes me feel close to him, but out of nowhere we can't even spend fun time together because there's pain that never existed before this disaster of a pregnancy. 

This has all happened so suddenly, I'm not really sure where hope and faith are supposed to live. 

Thanks for listening to me!


Hi, first I just want to send you a hug and let you know it is okay to mourn right now. Time will bring healing, but take the time you need to care for yourself and your husband. I had an ectopic pregnancy when I was thirty a year and a half ago treated with methotrexate and then I had a laparoscopy and found out I had endometriosis. I realize now I had some of the symptoms, but I never knew I had it. My doctor had me go on Lepron Depot for sixth months which may be an option depending on your situation and we are now trying to conceive again.

Good news though is we did have a successful pregnancy before the ectopic even with my endo so it is possible. It will take a few months for your body to flush out the methotrexate and your hcg to go to zero. Most women can try again after they have had a couple normal menstrual cycles. I recommend staying clear of Google for a few weeks and then sit down with your OB and a list of questions and a trusted friend to get some clearer answers. May God give you peace and rest and heal your body.


Thank you for responding. 

Would you mind if I ask, what your symtoms were which connected to the endo?

For the surgery when they removed the endo, did that burn off the lesions or did they cut them?

I know when they do the surgery they are going to tell me I have stage IV with completely blocked tubes or some other nightmare.

Also, I'm sorry to hear about your ectopic pregnancy loss. I know how hard it is. I'm taking mine extra hard since it was my first known pregnancy and it pretty much guarantees I will never be a mother now. 

My levels hit zero a couple of weeks ago but the cysts have been causing pain. Doc put me on the pill to calm my ovaries down until we can figure out what is wrong (even though we technically know what it is). 

I wish I knew God was with me right now but truthfully, it feels more like he's abandoned me with a diseased womb as punishment for something. I hope he forgives me one day. 


For symptoms, I have flu like symptoms and intense lower back pain for the first day I start my period. I think they cut them, but I’m not sure. They only did my Fallopian tubes and not any other areas.

I’m sorry you are still having soo much pain with your ovaries. I want you to know that this is not punishment for something you have done wrong. Part of living in a sinful world is that we have imperfect bodies that don’t always function as originally intended. I know God feels far away, but I believe He cares deeply for you and your sweet baby. He loves you and there is nothing you could do to change that. “But God demonstrates his own love for us, in this: while we were still sinners, Christ died for us.” Romans 5:8


sorry to read your story... I was diagnosed with stage four endo at the age of 33 (I too had never been on birth control, just thought my periods were a little heavy, the pain got worse as I got older), my doc suggested surgery to remove it (burn and cut away), the day before my surgery my SIL announced she was expecting which was particularly difficult as I didn't think we would be able to have kids. anyway I had my surgery and though my period pain subsided somewhat, it wasn't always pain free (doc actually said that having a baby would ease my period pain in the future). the doc advised we get on it with making babies. for personal reasons, we wanted to be married when we had kids... then covid came along and our wedding pushed from April 2020 to September 2020, all the while the voice in my head was saying... it is only five months, but time is precious, which only worried me more.
anyway, we got married 18 Sept, my last period was 25 sept and I am now 28w pregnant at the tender age of 35 (we were lucky enough to conceive first month of trying).
I know it's emotional and overwhelming, but you do still have time. my advice would be one step at a time, do the surgery and go from there.
I'm the luckiest woman in the world and have a husband who is by my side every step of the way, when I first had my endo diagnosis we spoke about babies and together decided that if we couldn't make a baby, there are plenty out there who need rescuing, I know it's not the same, but it's not just pushing out a baby thata makes you a mumma, and there are alternatives, but one step at a time and cross that bridge as and when you come to it.
I have friends who don't have endo who have taken 5yrs and three rounds of ivf to conceive, friends who have babies but along the way suffered losses, I count my blessings that thus far he's healthy and growing well, but it all started with my endo diagnosis and the surgery,
this is the beginning of your journey, not the end. stay strong, stay positive and one step at a time 💙


Something to look into.... I have read that the Keto diet (low carb) has helped lots of women with Endo get pregnant. Search for the Facebook page “Keto Babies”. 


I’m so sorry for your pregnancy loss. Please don’t give up hope. I had surgery at 29 to remove endo and was finally diagnosed as having stage 3. I had endo symptoms since getting my period at 13 years old. My husband and I tried for a year to get pregnant before my surgery. I got pregnant with my first daughter the month after my surgery. She is 7 and heathy.

I now have three kids and have never had a miscarriage. I’ve conceived my first at 29 years old, my second at 31 years old and my third at 35 years old. I didn’t use any fertility treatments to get pregnant with any of them.

There are so many women with endometriosis that have children and don’t have fertility struggles.

If I were you, I’d get the laparoscopic surgery done. Your doctor will be able to tell if you have endometriosis and can also determine if your tubes are damaged. Then you get make a decision as to whether IVF is needed.

I’d be happy to answer any questions you have. I wish you all the best.


first of all, I am so sorry for your loss. I was diagnosed with stage four endo 3 years ago at the age of 27. I've had 2 laproscopy surgeries and have had one large cyst on my fallopian tube and one tumor that was attached to my uterus. I was put on Lupron depot for one year to help the endo. My advice is, get a second opinion. I was misdiagnosed for 2 years until I found a new dr to actually help me. I know a ton of women who had endo and have had successful pregnancies now. I used to have pain with sex up until I started the lupron. I was able to get pregnant but miscarried recently ay 8 weeks. I will most likely try again without IVF because I can't afford it.


I have not personally heard that miscarriage rates of women with endo is that high. My issue was the getting pregnant part (took 2 years), not miscarriages. While fertility issues are common, a lot of women go on to have babies with endometriosis. Cysts are common with both endo and pcos and don't really dictate your fertility, unless one gets bad enough that they have to remove it and the ovary with it. Usually, they never remove ones under 5cm with surgery. I feel you about hemorrhagic cysts hurting so much though, and am sorry you are experiencing this and fear over your fertility but some of these topics sound like you are being told incorrect things. For example, why can you not have a uterine pregnancy based off one miscarriage? Was this your own research, or did the doctor say that?

Excision surgery actually can help you have kids, it has helped many people, but it depends on your doctor's expertise. For example, excision is better than ablation. Things may come back, but you don't really know the timeline.

For me personally, I tried to conceive for 2ish years with no luck at 25. I was diagnosed with endo and had an ablation (at the time I didn't know excision was better), I didn't get any pain relief since I didn't get the best surgery option. I was told to wait a few months before trying to conceive again and I ended up actually just going on birth control bc we were having financial issues, then I got pregnant on birth control eventually. I had been using the combo pill and had to switch to a progesterone pill due to a health insurance gap, and I actually think the progesterone helped me get pregnant bc I was taking it enough to have it in my system but not enough to be fully effective.

Also, for sex, I can't say I have a fix... Sex still sucks for me too, but there is a product that helps a bit... Google "Ohnut". It looks weird but helps sex be less painful.

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