Symptoms

[Ljs383]

Hello I have had pelvic pain and period problems for years but for since 2019 it has gotten worse. I’ve had 3 miscarriages and 2 healthy children after each pregnancy symptoms have worsened. I’m waiting to see gynae for a second opinion. The first one just said my periods are regular so probably not endo and may never know what is causing it 🤦‍♀️ I then had a follow up with a different gynae who said it could be endo or cysts. So after looking at endo I decided to ask for a second opinion with a endo specialist. I’m currently on the waiting list. My symptoms seem to be not too bad at times then flare up at other times. My periods are sometimes regular then months when they aren’t, heavy bleeding for one or two days with clots and changing towel every 1-2 hours, but then other months they are really light, sometimes brown spotting before period starts, cramps, pain esp left ovary area but I feel so swollen and heavy and under where vagina is feels the same like the whole area from pelvis if that makes sense? At times feel like I can’t walk or stand up because of it and the pain goes down my leg. Sex is painful and urination can be also also. Does anyone else get these symptoms?

[Jellybean20]

Hi, I have had endo clearly for quite some time but never knew. I don’t have the painful heavy periods or clots but I always had a deep dull pelvic pain that would then cause pain down my leg like a nerve pain and I would actually walk funny from it. So bizzare. The only difference I noticed was I would spot at least 10 days before each period literally that was it. After seeing an emergency doctor about a pulled back muscle he randomly asked do I have anything else other than the back pain Going on so I mentioned the things I’ve just said and he asked me to go and see the gynaecologist. I was shocked because I went in for backpain so I went over there and then to the gynaecologist who done an internal on me and found a growth on my cervix and found my uterus bleeding. I was obviously shocked at this but I had a cin 3 cell removal off my cervix a year before so I had presumed the period change was due to that procedure. Well after a biopsy of the growth was found to be endo which is very rare on your cervix I was basically fast tracked through everything, ultrasounds blood tests colonoscopy and mri to be told I had stage 4 endo and need a hysterectomy and bowel reconstructive surgery. I did also have a cyst on my one ovary. My moral really is don’t base is on the amount of pain or bleeding, base it on the fact the bleeding in itself isn’t normal and that’s not ok. The painful sex is a worry!! Are you up to date with smears? After reading people’s stories I know I have been so lucky with how fast I have diagnosed but I have spent 8 years being told I have ibs and food intolerances which is annoying looking back. I’m on a provera tablet which has stopped all my symptoms and my bleeding and I’m feeling so much better from it and hopefully in the near future I can have my hysterectomy and get the vile stuff gone from my body. Hope any of this helps xx

[Ljs383 in reply to Jellybean20]

Thank you for your reply. Sounds like you’ve been through a lot. I’m due my smear but have been putting it off because of the pain but I’ve got an apt next week I’m also booked in for a scan as pain as worsened the last week. I feel like it’s my pelvis back and undercarriage whether it’s just pain radiating I don’t know but something definitely isn’t right. Like you’ve I’m been palmed off for so many years.

[Jellybean20 in reply to Ljs383]

Your smear is so so important! If anything is found on the smear you will be into gyny within 10 -14 days then every thing else that area that’s seems problematic should be fast tracked within the hospital, mine was anyways. I know smears really aren’t great but given your symptoms I would say it’s right up on the priority list then when they can hopefully rule the cervix out they will start look in the right places. Xx

[Ljs383 in reply to Jellybean20]

I’m booked in for my smear next week. I had an ultrasound yesterday they didn’t find anything obvious but will send the report to my GP. I know feel awful again pain shaky just generally crap. I’m due to ovulate so not sure if it’s that.

[Jellybean20]

Doesn’t sound great hun! Nothing worse than feeling crappy! Yes Ultrasounds don’t show much from the endo side but could show any thickening of your uterus! I’m so glad you have your smear booked 😊 even though they aren’t the most pleasant things in the world it’s just one off the list to do’s really. Has you doctor talked about taking any bloods? Xx

[Ljs383]

Normally I’m fine with having a smear but because of the pain I’m nervous about the pain it could cause. I had bloods beginning of 2019 checking if I had an infection as I had the coil and have had previously had PID after a miscarriage. None since and they won’t even check my hormones.