I'm new here - feel like it's all in my head...

[foursimplewords]

Hi all, I'm here and going back and forth in my head as to whether I'm just being a princess about period pain or whether there is some endo going on!

I have been on and off the pill since 2010. Mainly the progesterone-only pill, cerazette, due to migraines so can't have the combined pill. I came off the pill March 2017 as I wanted to give my body a break from synthetic hormones. I had also tried the mirena IUD but it gave me awful cramps and bleeding and I had it taken out.

My periods came back pretty quickly (they didn't appear on cerazette that much). Holy flip. They were painful. Mainly days 1 and 2. If my period started in the night the pain would wake me up. They are so painful I wish I could take the day off work sick. Sometimes before my period starts I get some spotting/dark blood a few hours before/the night before. I track my cycles on an app (they are usually 30-31 days long) and make sure I don't have any plans for when they start so I can be at home.

I had eventually had enough and went to the doctor; even taking prescription painkillers all through the day doesn't make it manageable (mainly on day 2 on my cycle). I have just finished my period, and a few nights ago I was in tears with the pain after 2 hot baths, hot water bottles, TENS machine, pain meds etc etc. I had to take diazepam just to get some sleep for work the next day. The doctor gave me some mefenamic acid but this doesn't seem to help when pain is at its worst.

I paid for a private ultrasound and womb and ovaries look healthy; great in terms of no cysts/fibroids etc., but obvs endo doesn't show up on an ultrasound. Now desperately trying to get referred to the gynae team/endo specialist at the local hospital. The guy practices privately too so I'm even thinking of paying for the consultation myself just to get the wheels in motion.

But I don't think I have it half as bad as people say it is...so I think I'm just being an idiot. I'm not in excruciacting pain all month round. It's mainly the week running up to my period with random cramping and then the period itself.

My main symptoms are:

IBS - I'm ALWAYS bloated, even in the morning, and always feel a dull ache on the left side of my body (previously had ultrasound on gall bladder as was getting random pains in that area) It alternates between a poorly tummy and being blocked up. I do get random stomach cramps through the month too. Bloating gets horrendous during my period and I feel so ugly and fat. I always look pregnant. Had a panel run on my tummy and nothing has really showed up to be causing the bloating/IBS.

Sometimes sex can hurt, but I have just dismissed this previously as being a dodgy angle or something. If the pain occurs, I then feel all crampy afterwards.

I get random, but HORRID, shooting pains in my lower pelvis a few times a month - like take my breath away can't walk or stand up straight type of pain.

Sometimes I get random nausea/hot flushes through the month. Often convince myself I'm preggo on the run up to my period ahaha.

I need to pee a lot - it's a running joke now haha. I have to pee twice before I can go to bed every night.

I have had ongoing back pain problems since 2014, which worsen near my period. The physio just said it was likely because of the pelvic ligaments loosening which made sense, so $I just kinda dealt with it.

I get weakness and numbness in my left leg, again I just thought this was related to any tightness in my back really.

Arghhhh. Any advice? Am I being stupid and wasting doctor's time?!!

[sonia1234]

I’m the exact same. My period pains before the pill we’re excruciating and I also have trouble at times having sex, I’m also always bloated when I’m on my period. I really want a laparoscopy because that’s the only way you can be sure. I think you should look into that as well

[foursimplewords in reply to sonia1234]

thank you xx

[KatMT]

I feel the same as you and have similar symptoms. I asked my doctor about a Laparoscopy, and told her I just wanted to know for sure if my symptoms were really endo or not. She was hesitant, but I told her it was affecting my sanity and I wanted to see if I needed to start planning for children with my boyfriend. She agreed to check it out. Maybe you can ask your doctor the same? You are not wasting the doctors time if you're trying to figure out whats going on with your body. You know best what you're feeling. Best of luck to you. X

[foursimplewords in reply to KatMT]

thank you xx

[123happym]

Hi a laparoscopy is best way to diagnose endo, sometimes an elevated CA125 level shows up too. I had a lap and MRI, endo picked up in lap (stage 4 RV) and MRI confirmed extensive adenomyosis. Am 46 and had ultrasounds in 2013 & 2016 because of pain which came back clear.

Don't be scared of standing your ground with GP and if affordable a private consultation could get you on NHS lap waiting list sooner than waiting for gynae referral. Specialist BSGE centres are great if you can access one close enough to you.

Please get things checked, I left it too long. Pain is not normal, we just get used to it. I now have pain all the time and am actually really looking forward to my hysterectomy/excision/ovary removal!

Be informed when you go to docs and write a symptom/pain list before you go, it helps when they start asking questions.

Best wishes xx

[foursimplewords in reply to 123happym]

thank you- I am also chasing a private referral but the guy's secretary is useless to get hold of!!