Endometriosis & Infertility

erinnfetterman · June 2017

Hi Everyone,
I am new here, well been around for awhile but don't post much.

In 2014, I was diagnosed with Stage 4 Endometriosis. Since then, I have had a laparotomy and laparoscopy, 2 rounds of Lupron (one for 10 months and one for 3 months). The latest lupron ended in January of this year and then working with my RE, we decided to try 3 rounds of IUI. I agreed to that and we went through the first 2 rounds in March and April. Both only had one follicle, but RE thought everything seemed good. In May, I took the month off from IUI because we were on vacation and couldn't get to the RE at the right times.

I went about bout a week and a half for the ultrasound for June's IUI, but they found a very large cyst on my left ovary. It wasn't there in April, and I wasn't on any of the medications in May. So it's more than frustrating. RE said no IUI this month because of the cyst. They put me on a birth control for a few weeks to help decrease the size of the cyst.

I am thinking (don't know for sure yet) but I doubt I will be able to do another round of IUI. Just a feeling I had.

My RE wants to discuss IVF. So I made an appt for the end of July. I am on a wait list to talk sooner if possible. I didn't think I would ever want to go through IVF. Mostly because for my mental and financial states. I would be crushed if it didn't work. I am already have a hard enough time with IUI not working.

My husband and I have also discussed adoption, but it's just talking for now and he isn't very keen on it yet. I think that's were my heart is at though.

Has anyone had any success with Stage 4 Endometriosis and IVF? How many rounds did it take? How did you make the decision?

Thanks for your thoughts.

Sugarbreak · June 2017

Hey there! First of all, I'm sorry you have to go through all of this. This is such a rough road to travel. (((hugs)))

I just want to share my experience since I also have stage 4 endo. However, it wasn't really discovered UNTIL egg retrieval during my first IVF cycle! While they were aspirating my follicles for eggs during retrieval, they found that some of the follicles were actually endometriomas.

I had suspected endo in the past due to painful periods and a blocked tube discovered during an HSG a couple of years ago. But, I never had a doctor really encourage me to do a laproscopy or anything like that.

Once the cysts were discovered, I was told by multiple REs at my clinic that if I want biological children then IVF was indeed the best route for someone with my age and diagnosis. So it sounds right to me that your RE would suggest it to you. BTW, how are your tubes? I'm assuming those have been checked? Do you have any other infertility diagnosis besides endo?

Cycle #1 didn't work out, so I took a few months off to get my bearings and make a few tweaks. I started cycle #2 in May and am now a little over 6 weeks pregnant from a fresh transfer! It's so early and a lot can happen. We won't be out of the woods for a while. But for now I'm pregnant and I happen to have stage 4 endo.

Another encouraging story: A friend of mine who has severe, life long endo with two blocked tube got pregnant and delivered a baby girl from her first IVF.

I certainly understand your resistance to IVF. It's a huge commitment in every way: financially, emotionally, physically. It can put a strain on your career and bring challenges to your closest relationships.

Years ago, when I had a miscarriage and my infertility issues began to surface, I told myself I wouldn't do IVF due to the cost and the anxiety I have around medical procedures. But it became more and more apparent to me how much I wanted a family and the experience of parenthood. I was so afraid of making the plunge. My husband wasn't much help because he basically left it up to me to decide.

The indecision actually put me into a state of heightened anxiety and depression. I decided I needed help, so I started seeing a therapist who specialized in infertility. With her help, I found ways to cope with my fears and anxiety and arrived at the decision to give IVF a try. It took me almost a year to commit.

Anyway, I hope you don't go through the despair I went through and that your decision making will be more forgiving. I just want you to know that you're not alone in your feelings and many of us have been there too.

liljoy-2 · June 2017

Hi there, sorry to hear about endo sisters. I too had stage3/4 discovered through a laparascopy last year because I had excruciating endometrioma cyst pains. I was told to hurry getting pregnant (as I was already over 35). I tried naturally for a while, then with IUIs, nothing. Unfortunately, stage 4 endo is resistant to IUIs, but with IVF chances are good, as long as you are relatively young (e.g. under 38) and with good ovarian reserve. My ovarian reserve was diminished on one ovary because of the surgery, but the other one picked up the slack, and my IVF was a success.
Yes, there are many papers and doctors out there that recommend IVF right off the bat to women with stage 4 endo. Unfortunately, the chances of natural or IUI fertilization are very, very slim, most likely because of all the oxidative stress/inflammation in the pelvis, if not for the anatomical distortions to the tubes, etc

MMD1986 · June 2017

Hi @erinnfetterman! I was diagnosed with stage 4 endo during exploratory laparoscopy last August. I completed four months of Lupron (holy hot flashes) and then a laparotomy to clean the rest up in November.

One of my tubes is pretty damaged from the endo so my doctor recommended going to IVF.

My first IVF cycle in April was cancelled to due to poor response.

My second IVF cycle in May my RE switched the protocol and we were able to retrieve 3 eggs, all of which fertilized and froze. I was hoping for more, but after glancing at my chart it appears I have a low AMH, I'm thinking due to the surgeries and endo. My RE was very pleased with the 3 retrieved. I did human growth hormone as part of my protocol to help with quality.

I haven't transferred yet, that's next month, but my RE said he doesn't see a reason it wouldn't work and the hard part was getting the eggs.

I've read plenty of stories of ladies with endo getting their BFP with IVF, so it can definitely happen.

Cowboycorgi · June 2017

Trigger warning*

I was diagnosed at 18 with stage 3 endo, had lap to remove what they could.

At age 30 after trying to get pregnant unsuccessfully it was discovered that both my tubes were blocked. I had another lap to try and unblock them. Unsuccessful, and upgraded to stage 4 endo.

At 33 I had a 3rd Lap and IVF. Success! I have a beautiful 15 month old daughter, and trying FET for a sibling.

IVF is expensive, stressful, and all too often not the miracle people are hoping to have. I consider myself very fortunate to have been able to conceive at all. Too many amazing women haven't been as fortunate. I wish you luck!

liljoy-2 · June 2017

I just wanted to add and vent a bit, endo, especially stage 3/4, is a much more dire diagnosis than what they make it out to be, especially when it comes to fertility. If you consult endo specialists they all tell you off the bat that pretty much the only chance of conceiving is IVF. It's such a sad, scary and underplayed disease, it makes me really angry that the medical community is so uninformed and there is so little research to avoid recurrence and to address fertility.
I went through hell so far due to this. When I started having excruciating, debilitating pains they saw the cysts on my ovaries but didn't diagnose me right away. Several gynos I'd seen either scared me to death about ovarian cancer, or downplayed it and left me in pain for more than a month. I ended up desperately knocking on several doctors' doors to be able to have a lap right away and get rid of the pain. Of course, only later did I find out that the correct procedure is excision done by a specialist (and out of pocket), not laser ablation by a regular ob-gyn. Too late. My fertility was compromised by that time and now I walk around with the imminent risk of recurrence.

daisy222-2 · June 2017

Hi!
I have a similar story of many posters above, but haven't had an embryo transfer yet so I don't know if I will have IVF success or how long it might take. I was diagnosed with stage 3 endo in 2015 but it was suspected for many years before that b/c of painful periods, painful sex, and a large & persistent ovarian cyst. My ob/gyns never told me that endo could hurt fertility, although my RE (and everyone on here) is like of COURSE it can! So it is frustrating that the "regular" doctors don't take the infertility effects seriously enough to even mention it. And of course terrible pain doesn't bother them if a lady is having it

Here is a good article about this topic if you want to get upset: https://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/

Anyways, complaining and commiserating aside, after several unsuccessful IUIs we turned to IVF. I did 2 months of Lupron Depot in Jan and Feb to treat endo and prepare for IVF in March (although it was cancelled b/c of poor response). Finally had a successful retrieval in May (2 PGS normal embryos) and planning on a FET in July. My doctor doesn't think the endo will lower my chances of a successful transfer "very much", so that is great. So good luck moving forward! I think you should be hopeful! IVF is super intimidating at first, all the meds and acronyms. And of course the money is extremely stressful if OOP. I hope you can make it work though. My husband got in such a weird mood whenever I brought up adoption that I stopped bringing it up, to avoid the argument. But I know that is a very reasonable option too!

Question about your lupron treatment: were you on the serious lupron (Lupron Depot) or the more dilute version that people use for suppression before and during IVF stims? I suspect you were on the Lupron Depot, since it was for endo, and I just want to say OMG I don't know how you dealt! My two months were miserable with the hot flashes and headaches! DH and I had to sleep in different beds because I was sleeping so poorly. If I had to do five times that period of time, I would have quit.

JWatt5 · June 2017

*lurking from PAIF* Trigger Warning - Pregnancy Mentioned.

I have stage 4 endo. Right tube is slightly blocked (at the time of testing), 4cm (which is now 6cm - almost had to have it removed in my 2nd trimester) endometrioma on my right, deep bowel nodule etc...lots of pain. (and still have pain around my bowel and endometrioma during this pregnancy!) I've only had exploratory surgery - up here my specialists didn't want to operate prior to my attempts at my fertility goals because overall - things were manageable and I was willing to put up with the pain for the time being.

While my RE wasn't hopeful IUI would work I wanted to start with it because it'll also help to see how I react to the meds - and let's be honest, the COST of IVF!. So I started with IUI, going with FSH injectables right away as with endo that gives you the best chance (had the choice of that or Femara) and drastically changed my diet a few months before. I still believe that after 3-4 months the diet helps significantly - my pain was reduced during my cycles and my second IUI in comparison to the first attempt (that didn't happen because I had no mature follicles) was night a day and did work for me. My RE and I are still very surprised as I had the IVF consult booked already.

Following my pregnancy I will have to have the surgery to "clean me out" as that cyst is large and painful and my RE said it would need to be done for pain and before any second attempts at Fertility Treatments were made - hopefully it'll helps but I'll likely lose my tube and ovary on the right side and a potential bowel resection. If we want a second it'll likely happen though IVF attempts but we'll probably try IUIs again and then look at adoption. The infertility road is long and winding for so many...I just don't know if it's for us and we are very grateful that we have one on the way.

Message me if you would tips on the diet - if it doesn't help with your fertility will likely help with the endo pain and also just your life in general. My husband eats the same as I do and he feels better than he has in years and has lost that extra bit of weight.

I wish you the best in your journey - I understand how terrible Endo is - I wouldn't wish it on my worst enemy. Don't give up hope

Sugarbreak · June 2017

JWatt5 congratulations on your pregnancy and I'm sorry you're still having pain! I always understood that endo goes into remission during pregnancy, but sounds like that's not always the case. What do your docs say about that?

I'm curious how exploratory surgery is done in cases with endo on the bowels. I would love to hear about your diet changes if you have a chance to share.

JWatt5 · June 2017

**TW**
@Sugarbreak - Thanks!! I'll message you the diet information that I followed (the big point of it was clean eating/eliminating inflammatory foods - Almond milk becomes your best friend lol). For the pain I'll message here as it may be good for others to know.

Endo does typically go into remission - and for the most part it did. But for me, the first week of my pregnancy I had cramps like it was cycle day one - I thought there was no way in hell that this was going to be successful. They subsided after about 4 days and haven't come back.

The bowel nodule I have has likely damaged the nerves as it's deep enough to be seen on an ultrasound. Had to exploratory lap - was going to be a regular lap but became exploratory/no repairs. It's not normal for them to do that but I was firm that my fertility goals came first and it was decided it was best to leave it alone for now. Also had a colonoscopy to ensure it hadn't eaten through the colon wall before TTC. When they found the endometrioma the following year I was ready to go to the US so I could pay for an MRI to see if we could get a better idea of if there's more damage (I wanted more info before going straight to IVF) but I never got to that. The diet I still need to keep inflammation down - the first time I had a burger thinking it wouldn't affect it I was sick to stomach as I hadn't had red meat in months and then my bowels went bonkers - felt like day one of my period for two days.

The endometrioma actually started growing once I got pregnant/from the meds. At my follicle scan it was sitting pretty still at 4cm, then my 6 weeks scan 5cm, NT scan it went up to 8cm, 20 week scan down to 6cm. It really responded to hormones - which isn't completely normal (and a little worrying) but things seem ok now. If it had grown again at the Anatomy Scan they wanted to take it out right away because it's not normal to have it keep growing, like you said it should stop progressing - there was worry it wasn't that, maybe a mass but then it started acting normal again. I'll have surgery next year as the cyst is now too large - it's gotta come out. We think I'm full of adhesions on my right side - the ovary hasn't moved up the way it should during pregnancy and now he's basically sitting on it - and somedays, like today, it's painful. BUT - it's still nothing like before - I'm not looking forward to the return on my period. I plan to go on the Mirena IUD until surgery after my LO is born.

Edit to add something!

Sugarbreak · June 2017

@JWatt5
Thanks for sharing and sending the diet info. I sure hope you have a great rest of your pregnancy and that things will be well managed once your LO is born and you're ready to tackle the endo!

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