Endometriosis girlies

I'm just trying to prepare myself for my endometriosis possibly being worse PP. Thanks for your input to know what I can possibly expect.

Can't help with the endo but have ademyosis in the family. My GP has referred me to gyne (UK) and is a 2 year wait for an appointment 😫 GP also explained they won't diagnose anything until 2 years PP as there is no 'normal' in that time as everything is still sorting itself out. GP did give me strong pain meds though so 🤷🏻‍♀️

I'm so sorry to hear this! I don't know very much about adenomyosis, but I know it's a terrible chronic illness. When I first got my periods as a teen I bled heavily all of the time for a year. I was sent home from school many times after ruining clothes because I had irregular periods and never knew when to expect them because I would have a period for a week, it would stop and then come back a few days, weeks later, so extremely chaotic. I always carried period products, but by the time I'd get to the restroom, I'd already leaked through clothes. So my periods used to be extremely heavy and gradually decreased in flow by the time I was 18. I figured because of this I didn't have adenomyosis, but they are back to being heavy like they were before and I really don't want to have accidents again since my periods have never been reliable and I don't always know when it's coming. I'll have to make an appointment with my gyno to see if I need to be on a wait-list to be seen 😩

My mum was similar, heavy painful periods but became much worse after having kids, she wasn't diagnosed until she had a hysterectomy in her late 40s unfortuantly. It's very hard to diagnose via scans by the sounds of things & not a lot they can do for treatment although there was some options before the hysterectomy but by late 40s my mum was done with the pain! Defo see the doctor, as you have endo diagnosis they may be able to see you quicker if you are allocated a doctor already xx

@Corin thank you for sharing your experience and advice. I'm really hoping I don't have to wait to be seen. I'm a little worried about anemia since endo exhaustion already takes a lot out of me. I had anemia really bad as a teen and I remember the exhaustion that comes along with it.

Mine skyrocketed after having a baby. I came off BC about a year before getting pregnant, my first period (after stopping BC) was BAD but I figured normal, it didn’t get better so I started seeing dr for painful periods. By the time I got in for a scan I was pregnant and they ‘couldn’t see anything’. 6 months PP I suddenly got pain so extreme it floored me for months, I had blood tests for every infection under the sun but dr’s couldn’t figure it out and just said it was IBS, even after internal scans and gyno appointments. I continuously bled for almost a year and was completely housebound and most days bedbound. Only when my daughter turned 18 months I found out about going private and got another scan which showed severe endo symptoms. Had my op and turns out my bowel was pulled right up in my abdomen and fused to my abdominal wall, my ovaries were also fused to abdominal wall and my uterus ligaments had DIE (deep) endo.

Before pregnancy periods meant 1 week in bed with an occasional hot water bottle. After pregnancy was lidocaine patches+ electric heat pad + hot water bottle and that still didn’t touch the pain, I was on nerve pain blockers that knocked me out the whole day and it was still worse than labour pain. Pre-pregnancy periods had NOTHING on PP. The only thing that helped me was the laparoscopy, I’ve been 95% pain free now since September and I’m still learning how to function as a normal human that’s not consumed by pain

So I had a lap literally a month before I got pregnant and my period came back about 8 weeks pp and it’s been very consistent and not bad at all. I’m now 19 months pp and still doing great.

I haven’t been diagnosed but I suspect I have it. My second or third period after having my first was as painful as my unmedicated labour 😩 luckily they never got to that point again and went back to my pre baby normal after about a year then I got pregnant about 3 months later lol I’m 10 months pp with baby number 2 and I’m starting to feel like they’re becoming more “normal” again

@Lauryne your story is very similar to mine. I had my diagnosis in 2020 after I went into the ER for severe pelvic and stomach pain. They found a cyst (I have PCOS too, lucky me) the size of a baseball wrapped around my fallopian tube during an ultrasound and had to do an emergency surgery. During that surgery they found my endometriosis (and removed my fallopian tube). It's the speckled kind so unfortunately they can't really remove it because there are so many but they said it is pretty severe. I think I'm stage 3. But yeah, my pain is definitely comparable to labor pains which is unreal. I'm going to try to work on my diet because I know it causes flares and since PP and breastfeeding, I don't always eat great. I'm going to try to get a handle on that and I'm praying it helps to alleviate the pain because this is unbearable.

@Alice I'm hoping mine will calm down too or at least go back to what it was before I had my baby. I have been in so much pain today.

@Tessa yes, I'm on my third PP period and this one feels like I'm in labor. It's terrible. I'm making an appointment with my doctor tomorrow and hope they'll get me in right away. If you can, I'd say get the laparoscopy. It gave me so much peace of mind knowing what was causing my pain. Before having my baby I was usually able to manage it but right now it's on another level and I don't know what to do.

I’m Worried about the same thing… Like I’ve been growing a bumper crop of endo over the past almost two years 😂. I’m still bf so idk wtf is going on but my first period was like a dream period — minimal pain, 4 days of bleeding. Then the next was omg, it felt like I had a bbq full of hot coals in my pelvis, absolutely excruciating and full on flu-like symptoms. Then nothing for a month. And then I just remember all of last August I had a like month long period I just didn’t stop bleeding. It was painful too but maybe not as bad as that second one. And now since then I haven’t had a real period but I also went on the progesterone-only mini-pill to hopefully get ahead of things if it is endo. I do also feel like I am ovulating and am getting a huge amount of abdominal swelling and pain when I should be getting my period. Ugh I think at this point that’s the most likely explanation. I will say after 2 surgeries and years on lupron etc etc. I’m going to see a real expert (privately).

@Kathryn yeah, I was really surprised by how my first PP period was painless. It was the strangest thing because I've never known what that was like. But yeah, this one is, wow. It's like it's making up for what I missed on that first period and then some 😩 and oh my goodness, yes. The abdominal swelling I've had for over a month is so uncomfortable. It's almost the way it felt like I did when I did my retrieval for IVF, not as bad, but close.