Hi, new here. Endometriosis, about to start IVF, don't want to talk to any people in real life.

daisy222-2 · December 2016

Hi everyone,

I have been lurking for a while off and on over the past year, but I decided I could benefit from some anonymous support and community. Sorry this is long.

My story: DH (40) and I (34) have been trying for ~2.5 years and have "unexplained IF". Married for 3.5, together for 10. We are healthy, with the exception that I had a known, slow-growing ovarian cyst for many years prior to starting to conceive. Doctors thought it was an endometrioma and thought it was responsible for my PAINFUL, semi-irregular (20-33 days) periods (and painful sex), but no gynecologists seemed too worried or wanted to remove it for all those years. Looking back I am mad/sad about this :<(

Anyways, onto a RE after 1 year. Tests found that DH's sperm is great and everything was fine w/ me except for the cyst (at this point 3x4x3", almost entirely wrapped around an ovary). In addition to messing with the ability to produce follicles, they thought related scar tissue could be partially blocking the tube on that side (seen in HSG). But I had one good side, so they didn't think this was necessarily the cause of IF.

I had the standard laparoscopy/hysteroscopy to remove the cyst. They also removed several other endometriomas that were in the pelvic area. They said it was stage III endo, so not the worst but not great. They were a little fuzzy with details (as is the internet) about how or why endometriosis can cause IF. I wish I understood more about this. If anyone has any resources..? Dr did say that studies have found a temporary boost to success rates for ~1 year after removing endometriomas.

So... a month after the surgery we started IUIs. Did 3 IUIs over 6 months. I responded well to the clomid, had good follicle size and # and lining, but no luck. Good news is that the previously cyst-ified overary was producing follicles almost as fine as the other one.

So now onto IVF. I am about to start 2 months of Lupron Depot due to the endometriosis. First injection on CD2, which is in ~1 week. Then the standard IVF sequence, as far as I can tell. I'm sure it will suck a lot, and I am looking forward to being a part of this forum once I start having stuff done. Here is what is really stressing me out right now (I hope it is ok to talk about both of these things here):

MONEY: Our insurance paid for half the IUIs but 0% of IVF. This sucks. The thought of spending so much money on something that very likely may not work is really terrible! Its like buying a car except you may not get the car! I know it does no good to complain about this, but it is causing us stress. Although we can (barely/somewhat) afford it, this is also making us approach IVF with a cheapskate view ("Do we HAVE to do that step/procedure/test, etc?") which I'm sure is super annoying for the doctors.

NOSY PEOPLE: I am a private person, as is DH. We have not shared any of this (TTC, IF) with either of our families (all in other states). A few friends know a little bit. The one exception is my sister (who is a doctor and has been helpful with medical terms, drugs, etc; she knows everything). I would like to keep this overall privacy; having people know my medical issues does not help me feel supported in any way and I hate how people get when they know you are "trying" (asking and wondering and talking about you, ick). Well, mom, a bored and nosy lady, has sleuthed her way to the fact that we are TTC but with IF and is gossiping about it and I hate it.

More about that: I am not close (in either sense) to my parents, see them about once a year. I especially do not get along with my mother, but she tries to force closeness. Among other issues, she is gossipy and tells me peoples' private personal or medical info (people in our extended family or in the small town I am from). When I protest, her logic is either "well, we are a close family!" (we are not) or "well, I know you won't tell anyone!" (I bet people thought that when they told you!) Anyways, I did tell her about the laparoscopy last spring (I knew she would be mad if she found out that I had surgery and didn't tell her). I said it was to get growths removed. In the subsequent months, thanks to the internet, she has concluded that I had the procedure for IF reasons. The worst part is she recently admitted talking to other friends and family members about my issues (!), and when I became upset that she would tell other people about my IF (which I said may or may not exist, lawyer-style admitting to nothing) she claims she was "just trying to gather information because she knew I wouldn't talk to her" and "its because I love you". So she has been talking to several people who she things have/had endometriosis or IF to try to figure out what my situation is exactly. And its MY fault because I didn't tell her myself. Ahhh!!!!!! *head explode*

Now DH wants to tell his immediate family (a polite midwestern bunch) that we are starting IVF (he says he told them when he broke his wrist, so he should also tell them about this medical procedure), but in my current violated-feeling state I am like noooooo you may not. Is this fair of me to dictate? I had one other experience a year ago where I mentioned something to a work friend about how hard it is to get pregnant, but swore her to secrecy, and she immediately (like that day) went to another friend to tell her about it (and then that friend came back told me). That is a very middle school sentence, but ugh!

tl;dr: endometriosis sucks and also some people. But I am happy to be here. Hello!

MMD1986 · December 2016

Hi and welcome! Sorry you have to be here, but this is a great resource for information and support.

I'm going to agree that endometriosis does suck. I had a laparoscopy in August and laparotomy last month to clean mine up. I also did 4 months of Lupron Depot shots, so I know what you are going through. Does your doctor have you on the add-back pill (norethindrone) as well? It's supposed to help prevent bone loss and help with the side effects my doctor told me. The Lupron wasn't that bad for me, minus the hot flashes lol. Just waiting on AF now, so I can get on the IVF waitlist...so much waiting involved in this process.

As far as telling your family/friends what you are going through, your husband and you definitely need to be on the same page. It's not fair for him to tell people if you don't want him to. A lot of our family/friends know about our IF (well my IF) as its something we thought would be hard to hide. My last surgery had me in the hospital for two days around Thanksgiving, so there was no way my family wouldn't find out and I was walking like a granny for like a week. Everyone we have told has been really supportive, so hopefully the same happens for you if you decide to share.

daisy222-2 · December 2016

@MMD1986 Thanks for your reply! No, my doctor did not mention the "add-back pill", I will ask!

I wish I trusted people to be less gossipy. I'm sure most people are good and trustworthy. I just have this nightmare of showing up at DH's annual family reunion (~80 people!) and having them all look at me with pity and whispers. This is a crazy thought, absolutely no one cares this much either way, but I guess I need to decide if the support would be worth the lack of privacy. Thanks!

liljoy-2 · December 2016

Same boat here...Severe endo removed from ovaries and all the abdomen almost a year ago. Didn't help with fertility at all, unfortunately, and I have only a few follicles left on that ovary after the surgery because they took out half of the ovary. Still, they don't know why I'm infertile since now they don't see any endo and the other ovary looks very good. It may be because of damaged follicles or chemicals released by microscopic endo that interfere with fertilization (that's what my doc hypothesized). Endo is a mystery disease because they don't know the cause, the mechanism, why it affects fertility, and there is no treatment. It is rather puzzling since it affects so many women and nobody seems to research it.
It may be related to stress and hormonal imbalance (in my case I think it was since I had several years of emotional/personal distress and work related stress before ending up in the hospital with severe endo pain).

APM_SLP · December 2016

@daisy222 I don't have endo so I can't comment on that aspect. But I do want to comment on the sharing your IF with others...

I'm very open about our IF journey. Now, I don't go chatting about it at parties (unless somebody specifically asks me) and I don't go into great detail about dates of procedures etc. (Except with a couple bestfriends and very close family). At the same time, I do completely respect others who choose to keep it a private matter. However, I will tell you why I am so open about it.

I T hink it is so strange, and ridiculous, that infertility comes with this negative stigma. Like you said, people gossiping about it etc. I'm lucky to live in California where I think that many people are overly accepting of infertility treatments, and don't necessarily always put that negative spin on it. Infertility is a diagnosis, and it affects one out of eight couples. Would people be gossipy about someone with a Cancer diagnosis? Gosh maybe they would but I sure hope not!!

In a way, I feel like because I was given this diagnosis, it is my job to help educate people and help reduce the stigma. I think part of the reason for the negative stigma is because of people's lack of education on the subject matter. I hate to admit this, but I am in the medical field and even I was very naïve at the whole trying to conceive process, and infertility in general prior to me starting IVF. I also found it necessary to share with a lot of people, because of how much it affected our daily lives. I had numerous surgeries and was put under anesthesia, I have to be home at certain times to take medications, people wondered why I wasn't drinking, turning down plans and not going on vacations etc.

When people ask if we are trying, or comment on why we don't have a child yet, I let them know that we have infertility and we are working on it. This usually shuts them up pretty quickly if they are just being rude or snarky. However, I am surprised at the amount of people who then ask more questions and really want to be educated on the subject matter. They are pretty blown away when they realize how much goes into getting pregnant, how much your life is affected by it how much money treatments cost… Like I said, I don't go into complete detail, but if they want the information I give them enough so that they walk away feeling like they have a decent amount of knowledge on the subject matter. They usually thank me for being open with them.

So in conclusion, I totally respect that some people want to keep it a private matter. But I do think it is important for us to share our stories and educate people so that others can understand and be empathetic/supportive. I imagine (and hope) that sometime in the future infertility will not have this negative, secretive, association and in a small way I hope I can help us get there.

Lin&say · December 2016

@daisy222 I don't have any experience with endo, but just wanted to say welcome! I'm sorry you're stressing out so much about being able to tell people in real life. My mom is very gossipy too (thanks, small town) but I decided the support outweighed the thought of her blabbing her mouth to everyone (although I don't think she has). I think so many people are clueless and misinformed about IVF, so for me, opening up to them has been kind of an opportunity to provide some awareness to the process. I think you may find yourself surprised at the support you might receive...it's definitely nice to have at least one person you can vent to and immediately get a text back. But be sure to do what's comfortable for you...this is already a stressful enough situation. As far as finances, we've unfortunately been out of pocket since day 1 so I feel your pain. Finances have probably been our #1 stressor. Research pharmacy prices, financing programs, coupons available, etc. We also did a 0% 15 month credit card to make it a little more bearable. I agree, it sucks thinking I could be throwing away all this money. But I'd hate to regret not taking the chance while I could. And it will be oh so worth it if it does work. Fx and best of luck to you

liljoy-2 · December 2016

Also, for you ladies who are on lupron due to endo, what is it for? I know my RE mentioned this to me at some point in relation to endo and future IVF, but I brushed it off and I don't remember why he recommended it. I don't want to take any more hormones, the stim ones are enough for me. And I don't want to wait any longer either.

daisy222-2 · December 2016

@bestofjoy Thanks for your reply. That sucks that they had to take out some of the ovary. When I went in for the surgery, that was certainly an option (to remove some or all of the ovary); they wouldn't know until they were in there. My doctor mentioned something as well about how the endometriosis could be releasing chemicals that could inhibit implantation, or causing general inflammation which is bad for fertility, but he also didn't really sound certain of anything.

It IS so odd and fustrating that the disease affects ~10% (I have read) of women - so millions! - and it can severely impact fertility, and so little is known! I wonder if the typical OB-GYN even knows about the impact on fertility. I have been complaining to gynecologists for over a decade about really painful lie-on-the-floor-and-moan periods (and pretty much all the other endo symptoms) and they either say "I'm sorry, take some ibuprofen" or, in some cases, "Sounds like it could be endometriosis, which is consistent with this cyst, but just take some ibuprofen!". I wish someone would have said "this could hurt your ability to get pregnant". I might have changed the plan a little (started TTC earlier, or made sure I was on the pill all those years, which can shrink/stall endo).

liljoy-2 · December 2016

@daisy222 I wish I had known earlier. A endo "specialist" that didn't seem trustworthy to me because he was too obviously financially motivated (he was out of network) told me fertility will be impacted with or without the lap surgery but he wanted to operate on me for 7 hours and do all kinds of scary stuff like removing my appendix, blocking my nerves, etc. My obgyn who operated on me seemed to brush it off and kept telling me I was still young and perfectly capable of naturally conceiving, despite my coming back to him unsuccessful. I believe he may have botched my surgery somehow after I finally read the report (one cyst burst during the surgery and I had to have all the abdomen flushed, and one half of the ovary removed!!). Now the ovary is a regenerating organ, it grows back but the follicles are gone forever. He never mentioned these things to me for months, he just told me everything was dandy.

daisy222-2 · December 2016

@APM_SLP
Thank you for that post. That was really powerful and you are wonderful with words! I certainly see where you are coming from and agree, there is a unfair stigma associated with infertility. It seems like mental health, addiction, and infertility are all medical issues for which the person suffering is blamed (even if unconsciously) by much of society.

And bravo for you for educating people.... I agree the world would be a better place if we all just talked about the infertility and procedures openly, and made it less of a secret. I get such anxiety thinking about doing that though! I think it doesn't help that a lot of my friends are also people I work with or people my husband works with, and so there are professional-type issues associated with telling people we am TTC. Also one person at work has said things to me in passing like "You're not going to get pregnant, are you?"

But as we start IVF and I have to get subs for work (I teach) or cancel on some things and not drink at happy hour/book club, I guess it is inevitable to tell some people. So I will try and take your educator approach

(and really really hope they don't gossip). Thanks.

bluejeanbabi05 · December 2016

@daisy222 first of all I'm sorry you have to go through all this! It's so frustrating, I know. I had laparoscopic surgery last month and they removed stage 2 endo. 3 holes in my tummy but healing wonderfully no scars. Like you said, they can't say for sure that's the reason we've been having issues (18 mo) but with no other obvious problem it sure is coincidental. There just aren't any hard studies proving it.

With the information you gave and all the things our RE has told us, IVF is a really good option for you guys. It's all super similar to us- I have endo (comes back in 3-6 months even after surgery and I have PCOS treated w metformin) the next couple months we're trying naturally due to the surgeries but by Feb if we aren't KU it's IVF and over a 50% chance for us.

I guess my point is, be optimistic about the IVF. People with way worse situations than us are successful with it.

Also- have you been tested for PCOS at all? I had all over the place cycles 26-45 days, the first month I took metformin I had a 29 day cycle w O and every cycle since 29 days a O (6 months!)

daisy222-2 · December 2016

@Lin&say
Thank you for your reply. And good point, the money part sucks but it would such worse to not take the chance. We will definitely research pharmacy prices and coupons, etc.

And I agree, it is important to have a person who is very involved and caught up w/ the process to respond to texts and vent to (well, besides husband), and ask about me in a caring (not gossip gathering) way. I feel like right now my sister is this person and I am not sure adding more to this circle would help. Hmm...

@APM_SLP I have another question for you, since it sounds like you have talked to some number of people about IF and IVF: have you talked with anyone about IVF and then heard an earful about religious/ethical issues? This is one reason I am hesitant to tell our parents b/c each set is a flavor of religion that has strong pro-life views (his are catholic, mine are a conservative evangelical type of religion who voted for DT solely for his "prolife" stance.) I'm worried they may have views (possibly misinformed) on IVF (embryo storage, disposal, research). Plus the whole interfering with Gods plan part. I am not sure if I could deal with disapproving parents very gracefully right now.

daisy222-2 · December 2016

@bestofjoy I think it helps shrink endometrial tissue. So it stalls the endo and calms things down. I am 10000% not a doctor though

daisy222-2 · December 2016

@bestofjoy Ugh that is all terrible! the 7 hour unnecessary surgery (that he wanted to do) and not telling you about major complications! ahh!! Medical stuff is hard enough as it is.

daisy222-2 · December 2016

@bluejeanbabi05 Thanks for the optimistic words. Good luck to you!

I know very little about PCOS; I wonder if is it possible I could have undiagnosed PCOS even after all the tests and ultrasounds I've had already (for the IUIs)? Is it diagnosed from actually finding a polycystic ovary or other tests?

bluejeanbabi05 · December 2016

My RE told me I have it (due to my previous irregular cycles) even though the blood tests he did came back negative. The metformin has been miraculous. I would push to get metformin if they aren't doing anything else to get your cycles more regular. But if you go to IVF probably doesn't even matter they will manipulate your cycle anyway.

oh also- there are clinics around us that do a guarantee cycle. As in, you pay more than you would for one cycle but it's a mutual risk- if the first doesn't work they will do more and it's all included in that first price. Look into that maybe!

ETA for grammar

APM_SLP · December 2016

@Daisy222 oh boy do I have experience with people of faith and the IVF chat. My In laws are VERY Catholic. I'm talking like they go to mass every single morning, not just on Sunday. Once my husband and I decided we were going to IVF route, I was so so nervous to tell them! DH and I practiced what we were going to say before we went to have the conversation. Of course my husband completely chickened out and I ended up doing all of the talking! LOL

Surprisingly, they were very supportive. I was really shocked. Prior to that conversation I think they would have completely disagreed with the IVF process. But, listening to our diagnoses and knowing how much we want children, I think it hit home for them and they understood that honestly, it's not that bad! We did, however, not share details (and don't ever plan to)with that side of the family about how many eggs were retrieved, PGS testing etc. We did not want to have any discussions or judgment about leftover embryos etc. because we could only imagine how that conversation would go.

I did did have the convo with a friend who is very religious as well. I kept things a little bit vaugue and stuck to the facts. Talked about how my DH and I are not young (when it comes to child bearing), I have two blocks fallopian tubes so the odds of us having a baby naturally are pretty much 0%. She knows how bad we want children. I told her, when she asked, that we would use all of our embryos (because we will use them all in one way or another!). She may not have necessarily agreed but she was more empathetic to why we made the best decision for US at end of the convo.

joneser1281 · December 2016

@daisy222 I can definitely identify with your post! You and your DH are similar ages to me and mine... After having a small bowel obstruction last month, we are concluding I may possibly have endo in the bowel area. I have a colonoscopy scheduled for next week and possibly lap sometime after that. If I do have it in the bowel area, I'm wondering if it's been affecting our IF or not. DH has a morphology issue, but it's significance has always been downplayed to us. I've never had any known issues thus far. Not sure if the cause of our IF is him, me, or a combo of both. I too have been complaining about on and off bad pain above my belly button with AF for years and it was like no doctor took me seriously because all of my USs and exams are perfectly fine. I've been told that hormones could just be slowing down my digestion at that time of the month... I need to up my fiber or take laxatives... There's no way of knowing if it's endo unless they cut me open and they don't want to have to do that unless they have really good reason to, etc. But if it has been endo for years and has been affecting my fertility or egg quality, I'm so worried that terrible irreversible damage has been done to my chances of having a baby. I've also never taken BCPs my whole life (except for the IVF and FET cycles I've done) because my mom had breast cancer when I was in college and the research at the time said I shouldn't take it. Now research shows there really isn't a link between BCPs and breast cancer... So I'm always wondering that had I been on BCPs for years like most of my friends, maybe I wouldn't have developed this possible endo.

Aside from having some meds covered with copays, we've had to pay everything OOP as well. I am totally with you on the privacy thing. I want pretty much no one to know... But I think I am slowly telling more people since this has gone on so long and the bowel obstruction last month put me in the hospital for three days. I totally have a double standard though... I think I should be able to tell my mom and immediate fam (because I trust them to keep their mouths shut), but I don't want DH to tell his family anything (because they are chit chatters and I know will talk about me... I know his mom has already made comments regarding my stomach issues like "oh is that why she can't get PG?" Well maybe it's your precious son's sperm that's causing the problem!! Haha).

@bestofjoy I am with you... I hate that endo is such a mystery and that no one seems to know much about it! I sometimes think it's a money-making conspiracy... Oh all of these women have endo and can't get PG, but let's not figure anything out about the how or why because they'll just keep shelling out thousands of dollars to us for IVF. Haha. I think I have been watching too much Stranger Things on Netflix... Lol.

@APM_SLP I really admire you! You are absolutely right... Maybe if more of us with IF were open about our experiences and educated people, there wouldn't be the shameful feeling or stigma about it. I often struggle with feelings of, this is my private health matter and no one else's business... and I'm being a coward and should just tell people. I just didn't want to get those pitiful looks or people to talk about me and say poor her. But you're right... It would make things alot easier as far as missing out on plans, having to be home to take meds, etc.

daisy222-2 · January 2017

@APM_SLP Thanks for the stories. Glad those conversations went well. I really admire your ability to have them.

My MIL is also a mass-every-day Catholic! And helps serve communion, washes the altar linens, etc. DH downplays how religious she is, but I imagine she listens to guidance from the pope very seriously.

I feel like I am easily upset sometimes over this general topic that disapproval (which in most aspects of my life I wouldn't really care about) may make me more mad or hurt than I expect. Staying fact-based and rational seems key....

daisy222-2 · January 2017

@joneser1281

I too have been complaining about on and off bad pain above my belly button with AF for years and it was like no doctor took me seriously because all of my USs and exams are perfectly fine. I've been told that hormones could just be slowing down my digestion at that time of the month... I need to up my fiber or take laxatives... There's no way of knowing if it's endo unless they cut me open and they don't want to have to do that unless they have really good reason to, etc.

Yes, I had this exact same thing (bold) said to me on many occasions, even for years after they suspected the ovarian cyst to be an "endometrioma" (ie: endometriosis). There was no reason to do the lap procedure to either confirm the endo or remove it because its "benign" (i.e., not cancer) and will just grow back somewhere else anyways. They made it seem both harmless yet unstoppable and there was no talk of fertility side effects. And I must have seen 3 or 4 different OB/Gyns! I know there are insurance/$ considerations, but if I was a doctor I would suggest that people figure out if their endo symptoms are endo as soon as possible so they could be more informed (take BCPs, or move their TTC calendar up a few years even. Because until they start trying, pretty much everyone thinks it will happen immediately). But the bowel obstruction that had you hospitalized for several days sounds really rough. Good luck with the colonoscopy; I hope you find answers.

And regarding telling families...I think a double standard seems reasonable

Especially if the families live far apart and don't talk to each other (or overshare other people's business on the internet *shudder*). I trust my husbands family a lot more than mine (opposite of you).

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Hi, new here. Endometriosis, about to start IVF, don't want to talk to any people in real life.

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