This can't be normal?! : Hi, I am at the... - Endometriosis UK

Endometriosis UK

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This can't be normal?!

Shoppingaddict profile image
6 Replies

Hi, I am at the end of my tether and I feel like I'm the only one in the world suffering the way I am, no one seems to listen! Last night I told my boyfriend I wish he could just feel the pain I'm in so he could understand! I've had all the tests they're willing to give me - my laparoscopy turned up fine :-s my blood tests show my hormones a bit irregular and the ultrasounds I've had in the past 4 years have always showed my ovaries are larger than each other and suspected follicles over them, I know this sounds like PCOS but I'm sure it's more than that. At my last doctors appointment she said to me it's basically all in my head and I think there's something wrong when there isn't and I'm just over sensitive to pain, she said thus infront of my mum who had to come with me because she was so fed up of seeing me in the pain I get!

My periods are never on time and the 2 weeks I get leading up to it are horrendous my belly is so bloated, I suffer terribly with loose bowels I have period cramps and leg cramps this month I was limping round work the cramp was so bad! Without fail the day before I start my period I will get a migraine and have to stay in a very dark room. When I do come on my period the pain is so constant it's not like cramps that go on and off it's an intense pain that only a hot water bottle will soothe a little every month I'm having a day off work at least and it's bit embarrassing when it's your period (every woman in the world has them right!). I feel the pain mostly in my right ovary and also I can't remember the last time I didn't have to tell my boyfriend to be careful during sex because the right side of my lower pelvis hurts so bad during sex.

I'm exhausted by all of this now and get so down it seems to be ruining my life I always have to give up plans if my period falls at the same time and I know my job is in jeopardy!

I just want someone to understand and maybe put a name to it! I am 20 years old xx

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6 Replies
Impatient profile image
Impatient

If your periods are all over the place and very painful when you have them - what have you tried as a means of stopping having periods? It can't be worse than what you are gong through, and could be life transforming.

There are loads of options available and it is a matter of trying one and giving it a few months to see if it suits you,and if it doesn't then try something else.

You can use contraceptive pills to regulate your cycle, to delay having a period at inconvenient times, and to reduce the number of periods you have each year and also to stop periods all together if that is what you would prefer. They are all reversable methods and can be stopped should you want to take a break for the purposes of trying to conceive a baby, but after that those options remain as the best way to get to grips with the disruption and discomfort of periods.

Mirena is an IUD - it takes about 4-6 months to stop periods and can last up to 5 years. It is only 20%of the hormone dose of the pills,and once it stops periods ,it stops PMT and usually clears up problem skin too.

Birth Control pills, Arm implants, injections are all at your disposal free of charge in the UK.

Discuss your options with your GP or the local family planning clinic and get a free prescription for whichever method your want to try first.

What it won't do, is resolve sex pain issues. It is not a pain killer, but taking pain killers before sex and again topping up afterwards can help. Other than that and possibly changing sex positions to something less painful to you, there are plenty of ways to have a pain free and fun sex life without painful vaginal penetration. Just takes a bit of an open mind and willingness for you and your partner to explore different ways to have fun and not get hurt. Use the search box on the green bar at the top of the page and type in sex pain as it gets discussed so often and there are plenty of posts offering advice from other endo ladies in the same boat and what they have tried that works for them.

Another thing to check for if endo is not found in a surgery is a disease called adenomyosis. it is very similar to endo but is hidden inside the muscle walls of the womb and cannot be seen by laparocopy camera. It is usually noticeable with clues picked up in an MRI scan when you are on a period and sometimes from an ultrasound scan too.

adenomyosisadviceassociatio... is the website that explains all about adenomyosis. You can have that as well as PCOS, and period stopping should help with both conditions.

Yazza profile image
Yazza

Trust me your not on your own I actually emailed a complaint to my gp surgery because a female doctor said that endo wouldn't cause me that much pain! Little does she know and to add insult to injury she gave me antibiotics for a pelvic infection without even running any swabs!

I've been with my husband for 13 years!!! So you can imagine how that made me feel,..

So to prove a point I went to a gyni clinic had all tests done surprise surprise negative!

Also if the surgeon doing your lap isn't experienced with endo it could well have been missed!

All the ladies on hear will have gone through something similar as there is still too many gyni s that don't understand or recognise endo. Xx

in reply to Yazza

Hi shopping addict, I don't know what to suggest other than to keep pushing for answers. It really does sound like Endo to me though. Don't let them fob you off, you are still young, these things started happening for me much later and have jeopardised my chances of having children. Please keep on top of it. They will keep sending you away if you let them. Good luck with it all :-)

Shoppingaddict profile image
Shoppingaddict in reply to

Thanks for your reply :-) when my mum suggested it was endo I almost felt relief that I'd finally get a diagnosis, so as bad as it sounds I was kind of gutted when my gyno told me the laparoscopy showed nothing wrong! I also forgot to mention I've suffered with painful bladder syndrome for the past 3 years too where I have all of the symptoms of water infections and cystitis with no actual infection there! When I have had cameras into my bladder my urologist said that my bladder was covered in what looked like scar tissue which is assumed was from old infections so when I read up on endo and read about scar like tissue I couldn't understand why my bladder and womb problems have never been linked before! As young as I am fertility is one thing that is worrying me because I'm worried if I just take contraception pills to stop the pain/periods in 10 years when I do want children I'll of just hid all of the problems I have now! And will struggle then! Xx

in reply to Shoppingaddict

That's exactly what happened to me, I went on the pill at 14 because it was so painful when I first got my period each month, then I stayed on it for years until I was ready for a family then nothing happened.

It is a good thing though that you don't have Endo though. Its probably a good idea to get a colonoscopy done as give me an answer suggests, I had one and it really put my mind at rest. Have you had a thyroid blood test? That might be a good thing to check also. Take care

givemeananswer profile image
givemeananswer

Hi shoppingaddict, sorry for your frustration, I think alot of us can relate. Before my first lap I had a GP that suggested it was just gas but that was not the case,since you'be already had the lap and they say your uterus looks healthy, I would steer you toward having a colonoscopy. The pain from your colon canbe what you believe to be pain from your ovary, still it does sound odd that your one ovary is twice as large as the other. I would keep getting the transvaginal ultrasounds every so often to monitor iit's size. And read up a little about choliac/ celiac or gluten intolerance. Going gluten free has helped me in the past and is now giving my daughter her life back. As for the GP's I know how you feel perhaps (shop around) haha,for the one you feel is a little more empathetic. I once had one whom had a c- section so she knew what pain was, it makes a huge difference so nice you have your Mum backing you though.

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