Advice.

[AnonymousCat99]

Hello. I’m currently 20 years old and have been struggling with issues since the day my periods began around 10/11 years old. I remember my early cycles being on the floor in agony, slowly getting worse each cycle. Often times I had to craw down the stairs in the middle of the night desperately trying not to pass out or throw up. Other girls seemed to be coping fine so I thought I was being weak somehow. I simply cannot describe the agony and nothing would help, my normal activities were impossible. I tried to cope. As years went on things intensified and new symptoms emerged like being in some level of pain all of the time (period or no period), back pain and stomach issues. I would get intense stomach pain and ended up in A&E a few times due to it, it was ruled IBS. Headaches and back pain also a thing. Additionally around my pelvic/hip bone area gets incredibly painful, also sides of lower back? Basically my constant pain is what I assume is “normal” period pain. Now, I still have months where I can barely make it down the stairs and there is certainly never a month where I can go on as normal. My mood gets very low because the pain is just ridiculous. Cycles have started to get more irregular as I’ve gotten older, I sometimes have two within a month. Longest cycle was over 55 days and shortest being 19. Completely missed December. I took the pill for a year and while bleeding completely stopped the pain was always there. Ibuprofen takes off the edge once taken a full days dose but realistically it doesn’t do much unless I can take for maybe 3 days before, which is impossible because I don’t know when it’s coming. I also get chest pain which has been labelled as costochrondritis. Had that for a long while. I have had bleeding between periods. During my periods I get incredibly bloated and constipated, it can be painful to do both as well.

I have been to the Dr a number of times but I finally properly faced up to it some months back and got an ultrasound (external and internal) which came back normal. I was then complain brushed off. I’m working up the energy again to ask for more, its a cycle of “need to do something “ and “guess I’ll have to cope. I fear about loosing my job, fertility issues and overall just not knowing where this leads me. I’m tired of having no answers.

Could this be endometriosis or am I going mad?

Thank you in advance. Hope this is ok.

[Afrohair]

I’m so sorry you are going through this sounds awful I have endo but I’ve had it about 4 years you really need to ask your g.p for a referral to an endo specialist it does sound like you have it

[Chrissie66]

You poor thing, you certainly are going through it ☹️

It does sound as if it could be endo. Unfortunately, the only way to diagnose endometriosis is via laparoscopy, which means they’ll have to do some keyhole surgery. I don’t know where you live but most places have been putting off elective surgery because of Covid. But that shouldn’t mean that you can’t get a referral to a specialist, you may just have to wait a bit longer.

In the meantime, get yourself a journal or an app that will allow you to make a list of every symptom you’re having, and when and for how long you’re having it. Maybe even do a daily symptom diary. And not just the symptoms but how they are affecting your daily life.

Then in a couple of months make an appointment to see your GP, show him/her your journal, and say that you think it could be endometriosis and you’d like a referral to a specialist. And don’t leave the doctor’s office without a promise that they will refer you!

Good luck. Whatever this turns out to be it’s not “normal” and you shouldn’t have to live your life this way.

Take care x

[Magicstars4]

Hello, that sounds like me back in January. I had every other scan and test done when I finally said to my doctor, I think it could be endo and they did me a referral. You've got to be forward about it. Doctors dont always suggest things unfortunately. I hope you get it sorted, you sound like you're really going through it. Stay strong!

[Jessica89]

Ultrasounds don’t show endo- they show things like polyps and fibroids which often are linked to endo but definitely don’t go hand in hand. I had an ultrasound when I was at a similar age and it showed nothing. No further options were offered then some years later I couldn’t take it anymore and went back to the GP. After another little while I pushed for a laparoscopy and they found endo. And that was after a clear ultrasound.

Don’t give up, you’re not going crazy, even if it’s not endo it’s something and you know you’re not exaggerating your symptoms. You can do it 🙂 two things that I found have helped is peppermint tea. Leave the bag in, even whilst drinking it, it doesn’t work until it’s as strongly brewed as it can be! Even if you don’t like it just go with it. Also acupuncture massively helped me to regulate cycles and the pain. It allowed me to clock patterns and signs / symptoms of what was to come. This was not on the nhs so cost about £36 a session but I reasoned that’s a new dress / meal out and what I got in return was waaaay more beneficial. Plus calorie free 😬

[Whoisthis]

You’re going to have to be very pushy and veery brave, but what you described isn’t normal, it’s not right and it needs proper profession experts to perform a lap.

I’d go back to the GP find your closest endometriosis specialist that performs excision surgery not laser and get yourself referred ASAP.

In the meantime just to let you know I had 5 years of scans, MRI, CT, ultrasound and even a 3D vagi also scan... all clear every single one. During my lap with an excision surgeon he removed extensive endometriosis.

So scans will and do come back clear and the GPS need to stop relying on them to brush you off.

Good luck, if you can afford private mine cane to 5.5k with a top London surgeon, as the NHS is so jammed up right now.

[Lofty1589]

Hi lovely. Please, please, PLEASE try to get a referral to gynaecology because any pain that is debilitating is NOT NORMAL. Start a pain diary to keep track of your day to day and present this to your GP. Do some research into Endo and compare your symptoms with those that are common. I’m 20 too and I had to battle to be taken seriously because they will use your age against you. Don’t let them belittle you or try to fob you off. X

[Whoisthis]

Honestly these boards make me so so angers reading the disgusting ongoing dismissal of live limiting periods. It’s simple disgusting. Why we need to fight so hard to be heard goes back to Victorian ages, if anyone reading this wants some strength read a book called “pain and prejudice” is eye opening all about endometriosis and how the history of women’s healthcare is still in the dark ages. It will I promise empower you to fight hard to be listened too.

If you do ever get a male dr dismiss periods or endometriosis pain, ask him how he’d feel if his penis had been bleeding and sore for months and was told it was in his head, or ask him how he’d feel if his testicals felt like someone was piling them and stabbing them at the Same time.

Failing the above, take a man to all of your appointments, brother, dad, partner. Say they are taking notes and notice how differently you are treated and respect, it’s astounding, and equally upsetting, but you’ll get seen faster and a better outcome.

[Whoisthis in reply to Whoisthis]

Sorry spelling is awful!!

[AnonymousCat99]

Thank you all ☺️