Suspected endo - newbie

[Zulu9]

Hello all,I'm here as I'm losing the plot and a brief mention of endometriosis from a nurse has led me to this forum.

I'm not sure if this is endo but would love to hear if any of you have experienced these symptoms as I am currently waiting for a referral to gynaecologist. This will be long post just to give a full picture and get it off my chest I guess.

My periods have always been irregular and painful from when I started, mum said it was normal and then doctors said that because I am lea, light and active that is probably why I have irregular periods. This was when I was a teenager, I never went back about periods until I was in uni when the pain was bad and I went on the contraceptive pill. Periods were still painful but at least I knew when they were coming. At 19 I started getting lowr back pain and saw loads of chirpractors physios and went regularly for massages. I came off the pill 8 years as I was starting to feel foggy and was no longer in a relationship.

I kept going about my life and just came to the conclusions that I was a bit of a wimp and must just learn to live with painful periods and excruitating back pain

Move forward to the past 3 months, my back pain has been severely worse radiating up to my shoulder, goring pelvis ribs and down right leg. Feels like everything on right side is being pulled together and can no ponder twist tot he right. Period kicked in really bad and had excruitating pain under rib this did not subside after three days and I got severe chills, called 111 and sent to aande. Diagnosed with a kidney infection (even though white vlood cell count was normal just a low gfr-46) antibiotics given but did not get rid of the pain. Gp sent me back to aande due to I flammation in abdomen and I couldn't really walk-diagnosed with IBS and told i shouldn't be in the aande. That diagnosis didn't sit right with me so went private. Kidney function was back to normal but severe pain was there - vomiting, nausea all kicking in sporadically at this point. Fast forward to my next period and the pain was paralysing cocodamol didn't touch it it radiated through my whole body. First day of period I had a small bowel movement of just blood then was severely bloated and constipated for 2 days with then a sudden urgent and explosive episode of diarrhoea.

My period was extrnemly light and now stopped but still experiencing excruiting cramps and pain doen the whole right side of my body shoulder to knee.

Am I wrong in thinking this may be endometriosis? They have ruled out and issues kidney, gallbladder, liver, abdo ultrasound clear, lumbar mri for back pain was clear.

I am at a point that I am a healthy 27 year old and I should not be experiencing this amount of pain where my body feels 100 yrs old, I'm constantly tired signed off work for over a month now and as a teacher and this being my first sick days ever I am getting annoyed.

Sorry for the long post and advice would be great.

Am I going crazy? Is it in my head?

[SueSue00]

Hi Zulu9. Im so sorry this is happening to you. Ask for a referral to gynae/ women's health 4 your periods. When I eventually got there (your early journey sounded alot like mine) they basically said everything inI that area was bound due to endo. Basically really heavy periods and pain could be due to a number of gynae related things but it's the proximity to the bowel that means it can effect function there. You will get this sorted, don't give up ..you def don't have to live with this ..amd catching early enough will help limit any potential scarring etc x

[LivWilliams27 Moderator Endometriosis UK]

Hey Zulu9,

I'm so sorry to hear about the difficult symptoms you've been experiencing. It sounds like you've been having a really tough time with it.

I just wanted to point you to some potentially useful resources we have available, in the hope that it might help you! Here is a link to an information pack called understanding endometriosis, which includes a lot of detail about symptoms that someone with endometriosis might experience:

endometriosis-uk.org/sites/...

Here is a link to the Endometriosis UK website in case there is any more information that might be useful for you, and access to any further support you may want to access:

endometriosis-uk.org/inform...

I hope this is helpful, and i hope you can get to the bottom of all your suffering soon.

Best wishes, Liv xx

[Zulu9 in reply to LivWilliams27]

Thank you for your help Liv! I've seen a gynae and got an mri, nri was negative but he suspects endometriosis and has prescribed hormone injection.

I now don't know what to do, my symptoms haven't died down, my last period made me pass out on the toilet and I now am stuffling to eat food am nauseous and vomiting and having extremely painful bowel movements. The whole of my right side is in pain from the tip of my shoulder down to under rib and into my right leg with what feels like a pressure around my abdomen and lower back.

I've lost 3.5kg in the past 2 months my GP has referred me to a gastro specialist, I'm tempted to get a second opinion on the mri as I don't want to flood my body with hormones if it's not needed, nor do I want to waste doctors time. It either is endo or not but I just want a definitive answer as I'm missing work and can't afford trial and error to get a diagnosis.

Would it be outrageous to ask for lap, just so I can rule endonin or out? So I can move on to other specialists and find the correct diagnosis?

Thanks xxx

[USgalwthendo]

Hi Zulu9. Just wanted to chime in. I’m in the USA and our healthcare systems may be different but what is the same is the way us women get fobbed off when we complain about symptoms that, let’s be honest, it a man had this they would be on their knees begging for help. And then they would get the care. And the research to support it. I do have severe endometriosis. I was diagnosed about 10 years ago. But I complained as a teen and was told it’s normal to have this pain. Didn’t find out what was wrong until unsuccessful attempts to get pregnant. My symptoms have changed over the years but have/ do include: diarrhea, fatigue, pain in abdomen, pain down both legs/ thighs, back pain. It’s to a point I cannot work when I’m ill. I get ill every month when my period starts and then it lasts about 5 days. I don’t know if it’s endometriosis you have, but whatever it may be I do encourage you to be persistent. It is not normal to be in pain during your period, not like this. I wish you the best.

[Zulu9 in reply to USgalwthendo]

Thank you for your message.

I'm sorry to hear that you have severe endo, how were you diagnosed? Did a lap help?

I agree with gender pain discrimination! I have had a clear mri but the pain is getting worse, I last period made me pass out and couldn't work l, felt like I was in labour but it's the daily pain I can't tolerate. I'm not sure if this is endo or not but I do want to definitely either rule it in or rule it out.

X

[USgalwthendo]

hello. Yes I had a robotic lap to confirm diagnosis and also remove adhesions to preserve fertility. It was an outpatient procedure. Under anesthesia. Three incisions very small. After surgery they glued the incision closed. Home to rest for 2 weeks and pain meds. Unfortunately in my case it didn’t help with the pain or fertility. But for many it does. I have read on this site that now science is saying surgery is not always best option as it can make endo worse. And so if I was going through this now for first time I would check into all options including any new ways to get diagnosed without surgery if possible. My experience was 10 years ago so perhaps better options now? Every case is different. I just share my experience in hope it may be helpful to others. I often feel so alone with this disease-still- but coming on this site helps.