Post # 1
So I’ve been diagnosed with an Ovarian Emdometrioma which is Stage 4/severe Endometriosis. I have zero symptoms and it was only discovered via a miscarriage I had back in March. They saw a cyst on my right ovary and after a couple of follow ups throughout the year they’ve no told me I have an OE on my left ovary the size of a tomato.
I have an appointment today to “discuss surgery” and another one tomorrow which is via a private specilist. Just to make sure what the NHS are saying is correct and to see what he suggests.
We haven’t actively been TTC’ing since the miscarriage as we bought our wedding forward (which is now in 4 weeks time) and I didn’t want to be pregnant and also run the risk of ruining our destination wedding if there were any complications. (I had to cancel my vacation the evening I was due to leave for Florida because of the miscarriage). We were planning to TTC round about now but now I’ve no idea what this OE means for us and babies.
In the last week since finding out via a faxed letter (I won’t even go into the long list of incompetent ways this has all been dealt with) I have read a lot. Apparenly chances of conceiving naturally are 30% and that surgery can make infertility worse as healthy ovarian tissue can be destroyed during the surgical process.
I am of course devastated. I’ve always had a huge fear about my fertility not being as it should be and not being able to have kids (BTW i am 32). And now my fears seem to be coming true.
I’ve tried talking to my close friends/mum etc and all I seem to get is “Oh i know someone who had Endometriosis. And they have 4 kids now. You’ll be fine”. or “it’s amazing what they can do these days”. Yes, i get that, but with my mental health not being great at the best of times (I have BPD), I don’t think my poor little head can handle the disappointment I could potentially be getting each month when good ole AF arrives, or the stress of meticulously TTC’ing / IVF etc.
So I am wondering if there are any other bee’s with this? If so please share your stories with me so I feel not quite as alone as what I do now.
Post # 3
@bearsreddy: I do have endometriosis, though mine is stage 2, so it’s considered ‘mild’. I also have PCOS. However, DH and I TTC for over a year with one MC and no sustained pregnancy, so I’m very worried for the future.
“Oh I know someone who had endometriosis. And they have 4 kids now. You’ll be fine.”
I have heard that multiple times at this point, and it is the most frustrating, annoying, insensitive thing that could be said to someone dealing with this. Especially the “you’ll be fine” part, because really random person (or even friend/family member for that matter), you know that I’ll be fine? How exactly do you know- are you my gyno and I was unaware this whole time? Ugh.
My gyno told me that with surgery (laparoscopy/ablation) infertility actually increases for 12-18 months. My chances of conception each month go from 2% (as compared to a ‘normal’ woman’s 20%) to 4%- that is according to what I’ve found online and also backed up by my gyno.
I would say “Don’t stress” and “Just relax” but I know that being told those things really doesn’t help in a situation like this. I would talk to the specialist about all of your options at this point, and if you plan on having children, I would ask what can be done to help with that- since you have been diagnosed with Stage 4 endo, and have had one MC, I don’t think they’d make you wait to start medication/IVF if that is the route you wish to go.
Best of luck!
Post # 4
Thank you for your reply. I’m sorry to hear you’re having similar problems. and have the same insensitive responses from people! ARGH!!!! What is it with them??!
Yes I have read conflicting things that surgery can have positive/negative effects. I’m sure that one of them being that with an endometrioma (which is essentially a large blood/mass filled cyst) that because they can’t quite see where to cut away that they can end up cutting away healthy stuff. I guess it’s much of a muchness… you’re infertile because of the endometrioma, and possibly infertile becuase of the surgery. It sounds like whatever way it’s going to suck!
I do hope they can help with fertility sooner rather than later. I’m not getting any younger 🙁
Have you had any surgery or help with fertility yet?
Post # 5
I’ve had surgery, the laparoscopy/ablation to remove the endometriosis they could find (I was told the surgery would last approximately 30 minutes; it ended up taking over 2 hours to remove everything/as much as possible). DH and I are going to begin TTC next year, and I was told to make an appt with my gyno to discuss going on medication sooner (since he knows about our prior issues with TTC when I was using a different, horrible gyno). I don’t know if the surgery increased my fertility at all, since we haven’t begun TTC yet- but we’ll find out next year I suppose.
I was initially told I could have surgery or he could start me on Lupron (which is supposed to help with the symptoms and I was having multiple, but it sends your body into a ‘menopausal’ state…since I knew I’d want to TTC within 2 years that was a no-go).
Once we’ve TTC for at least a year, if we haven’t had positive results (with medication), we’re considering IVF (though neither of us really want to go that route).
Post # 6
- Wedding: August 2013 - backyard in the woods
@bearsreddy: I just responded to your post on the Charter’s thread- sorry, I didn’t see it before:) From what I’ve heard laproscopic surgery is very helpful in helping to conceive, especially if it’s for more severe Endo. Yes, it may destroy healthy tissue, but if the Endo is already extensive, removing it can remove obstructions that may be physically preventing conception.
I’ve also read that it’s thought that Endo is an Auto-immune condition, hence why someone with mild Endo can have such severe pain, and someone with severe Endo can have little to no pain, or vice versa- there’s no correlation between pain and severity. It also could explain how someone with mild Endo could have issues conceiving when there are no physical obstuctions. I may be biased to this theory though because my family has hit the auto-immune jackpot. My mom had lupus, hypothyroidism, RA, Endo, and MCTD among others. My dad has Wegner’s and my little brother has juvenile RA. I have Endo and Fibromyalgia myself. My other brother is also BP, so I can empathize and sort of relate to you with that.
I understand being scared about being able to conceive. So little is understood about Endo and conception. I hate it when people tell me it’ll be okay. I know they’re trying to be supportiive, but I’m like “You don’t know that!! No one does!! Ugh!!”. Then they say, we’ll there’s always IVF, or surrogacy, or adoption…they don’t get it!! I want to be pregnant, have my own children and you seriously think paying thousands of dollars or having someone else have my baby is a good solution? You’re missing the point!! End rant:)
Post # 7
Endometriosis is tricky. Truthfully, there are no rules about it. For some people, the surgery is immensely helpful. For other people, it’s not. I wish I could say something better, but it is what it is.
I have stage 2 endo (or that’s where I was last surgery, 4 years ago). DH and I plan to begin ttc in early spring, so I am trying to schedule a surgery for after the holidays. My specialist told me, based on what he’d seen inside me last time, that having surgery and then ttc after was my best chance. Everyone is different though.
As for the things people say….people are ignorant, without meaning to be. I’ve had people tell me there’s “no way” I’ll ever get pregnant (even though the doctors, with the actual medical degrees, didn’t agree), and other people tell me that they know “lots” of people with endo who had no problems. It’s frustrating, but seriously try not to let it get to you. Big hugs!