Endometriosis

Hi, that's so upsetting if you might have endometriosis! First of all, I'd ask for a second opinion with another gynecologist. This one clearly doesn't want to help you, and I'll tell you what can happen if you don't fight endometriosis early enough.

I'm 26 and started trying for a baby 2 years ago. I've had stomach pain during my periods my whole life, but I was always on the pill. I've also had shoulder pain for years but never made the connection. After stopping the pill for half a year, the pain became so severe that I went to the GP (a female one, no less), but I was sent away with the advice to just take an extra paracetamol. I walked out crying... A few months later, it was so bad that I was doubled over with pain during my periods and bled heavily for a whole month. By then, I was fed up and got referred to a gynecologist. He did an internal ultrasound and immediately saw two large cysts (size of tennis balls) and suspected endometriosis given my symptoms. However, the only way to confirm this is through laparoscopy, so that was scheduled. During the surgery, they clearly saw grade 3 endometriosis (4 is the worst) and couldn't even reach the cysts because my abdomen was full of adhesions. The hospital couldn't handle this, so I was referred to Ghent. After months of waiting, I finally got my turn for another laparoscopy, where they removed a lot of adhesions. It was a surgery lasting over 3 hours, and I had to stay overnight twice because I lost quite a bit of blood. During this operation, they immediately flushed my fallopian tubes to see if they were still open. One was completely blocked, and the other was enlarged and filled with fluid, so poor condition. The only option left was IVF. That's what I mean... What if they had found out earlier? Then my fallopian tubes might not have been blocked, and I could have gotten pregnant naturally? It's a disease that isn't taken seriously! So bad

On top of that, I'm unlucky that due to endometriosis, my AMH (egg reserve) is low, so I'm entering menopause earlier than expected. Unfortunately, I also don't respond well to the IVF medication, so everything is very difficult, and I'm trying to live with the accompanying pain. It's not easy, but I'm getting through it.

Please don't let them send you away like they did me, and choose your body before it's too late, in case you actually have endometriosis.. Better to have one check too many than regret it later, right? Wishing you lots of success and hoping for a good outcome!

Thanks! I don’t want to scare you, of course, but I do want to emphasize that it can be serious. I’m an extreme case, so it might just be a milder form for you, but I really wish someone had told me back then, “Don’t let them send you away ”

I’m really curious what the gynecologist will say now and hope you’ll let me know

You might also find more support on the pregnancy page of the forum (if needed) than here on Brabbels. That shoulder pain is so annoying, right I still have it myself.

I’ve had 3 ICSI attempts in the last half year, but unfortunately, I react so poorly to the hormones that I barely produce eggs, so it’s not really working out I’m quite the special case in that regard too! It’s not easy at all, but we’ve taken a break until after September. I needed it

I hope you’re getting good help, girl!

Yeah, that shoulder pain won't go away unfortunately, no matter what I take.. and it lasts for about 2 weeks for me too.. then it gets less until almost gone. For my period pain I take Aleve Feminax 2x a day and then the highest dose of paracetamol on top of that. Yeah, ibuprofen doesn't help me but otherwise I'd just take that, of course!

What a story, women25! Really sad about all that pain!
And Lily, I don't have shoulder pain but severe muscle pain in my legs during (and these days also a few days before) my period. Also terrible stomach pain during sex. The GP also suspected endometriosis and referred me to the gynecologist for an internal ultrasound. I still have to get that in mid-June. Are you getting an internal ultrasound on June 1st too? Hopefully your other gynecologist will handle it better! June 1st is already close! Are you dreading it?
I am a bit, you just hope everything is fine and that you get pregnant easily and all that, but well, not everything goes the way you want, right?; (here round 8) I'm glad they're looking into it anyway, otherwise it stays a scary idea that just keeps running through my head.

Hi Saar, sorry you're dealing with this too, but unfortunately you can rarely see it on an ultrasound. They did see 2 cysts on my ovaries, but endometriosis can't be seen on an ultrasound unfortunately; they can only see it via laparoscopy. So if they don't see anything, don't let them brush you off with the "it's all in your head" story! Gynecologists are unfortunately still not well-informed about this condition.

But I really hope it's not that for you guys and that it's something you can easily do something about

Keep me posted (private message is fine too..), because I'm curious what they'll say!

Lilly, I've had shoulder issues since puberty, but not as severe as when I stopped the pill. But I always had vague symptoms. Also, bladder infections twice a year, which is unfortunately also a common symptom.

I also had some vague symptoms that doctors never found anything for, which now makes sense.

I've accepted the endometriosis and the pain fairly quickly, but the part that we might remain childless, I don't think I can ever accept. Well, we have one more try, so we have to stay positive

Hey! It's so nice that you've already replied!
I'm curious, Lilly, I'll come back on June 1st to read how it went! Hope everything goes well!
And Women25: I had read on the internet after that ultrasound that it doesn't show everything! But I thought; if you really can't get pregnant and everything is bad and has grown over, then they would see it, right? I'm an incorrigible optimist but I hope they don't see anything and that we can still get pregnant? I'd be willing to put up with those few months of pain! Or does it not work like that at all? And do they calmly say there's nothing there and you just continue living with a growing uterus and all that?

By the way, does it happen in your family? It seems like it could be a family issue?

Oh and by the way, thank you both so much for thinking with me! You kind of feel alone with this, even though there are people living with it. It's like your body isn't cooperating, and that's hard to accept. I hope we all get to have another baby someday! I find waiting 8 months already so long, it's impressive that you're still so positive, woman, and I totally understand needing a break!

Doesn't happen in my family, and I really don't know anyone with it!
Saar, in my case, everything was fused internally, and the fallopian tubes were completely blocked and stuck together. They couldn't see any of that on an ultrasound. Unfortunately, it can only be diagnosed through a laparoscopy.
Good luck, girls!

Hi!
Yeah, it's tough, isn't it, Lily! Are you going to ask your doctor for a laparoscopy if they don't see anything on the ultrasound?
Thanks, woman! You too, strength and success with it, okay!
In my family, no one knows about it either, but all the female relatives on my mom's side suffer from severe abdominal pain every month (for most of them, it goes away after giving birth!), and there are also family members who had to wait years for children. So maybe they have it without even knowing? Or would it come back just as bad after pregnancies?
Well, we'll just wait and see. I secretly hoped it would happen this month so I wouldn't need to see the doctor, but I'm already feeling my legs again, so it probably won't happen

It's quite possible that she has it, since 1 in 10 women does, which is pretty common! But you can have it really badly (grade 4) and feel nothing, or have it very mildly (grade 1) and be in agony... so unfortunately, that doesn't help much

I used to look at http://endometriose.nl/endometriose/symptomen/ back then
and found a lot of symptoms there.
My most common symptoms (some things are so normal for me now that I might not even mention them):
- menstrual pain
- bleeding during ovulation and eventually almost the whole month long.
- shoulder pain and later other vague, unexplainable little pains
- pain during my ovulation radiating down through my legs.
- more and more frequent bladder infections
But the menstrual pain really stood out head and shoulders above the rest.

Pain during urination is also definitely a symptom. I get it on some days too; it really hurts when I pee. I also sometimes have a very swollen, painful belly.
Definitely mention it if you suspect endometriosis.