If you’ve had a hard time getting diagnosed please take a read and advise me.

[_chars]

First time posting on here. I’m desperately seeking answers. I feel like I’m fighting and fighting for answers which has become mentally and emotionally draining.

At the age of 13 I started getting extremely heavy periods as well as bleeding a full 7days to the point I became very poorly and suffered with anemia very bad to the point I would be passing out which still happens to this day from the age of 13 years old I’m now 22 however I get it iron transfusions if and when needed. My periods have always been regular, but I have very heavy bleeding and I’m in absolute agony every single month each month that passes by I think to myself it cannot get worse than this, then the next month it does and so on. There’s nothing that I’ve had that has helped with the pains every month on my right side, which seems to go across in a line to the left but always more on the right. My tummy swells up so much but so much more on the side I constantly get the pain and the only way I can describe it is as though my right ovary is twisted and something is attached by a string. A sudden movement and it would rip off. Very bad cramping that is constant. Also pains in my lower back, hip and leg. A constant dull ache that doesn’t seem to go until day 7. The pain makes me feel so physically sick I feel helpless there’s nothing that seems to help I have to sit in a position that I’m able to sit and rock forwards and backwards and left to right to try and ease the pain. I also get bleeding from my bottom every time I’m on my period. I’ve been in a 5 year relationship and never used contraception and of course never fell on. I’ve been referred to a gynaecologist twice now, been seen by so many doctors over the years and moved surgeries so many times too. I am almost certain I have endometriosis! The specialist and doctors that know best suggest contraception it’s all I’ve heard over the years, but I’m not happy with this decision it doesn’t give me an answer as to what’s going on. And I’m just not keen on the idea of contraception as I’ve tried before and I’ve always instantly regretted and ideally I’d like to get pregnant. I get really bad mood swings from them and I become a person I don’t like they also make me bleed and be in pain for more than just 7 days when I’m on anything, the last time I tried I was bleeding for 3 weeks. I’ve previously had ultra sounds & vaginal scans, ultra sound ruled out pol ovaries and the vaginal scan shown that my lining was swollen for the time of my cycle. I was told because of my age they can’t do any test on my fertility as you need to be 24 to be referred. Can anybody tell me if my story seems similar to yours , or even if there’s anything else I can do. I desperately want a laparoscopy to get an answer. Thank you so much in advance xXx

[Rachaellouiset]

Hello lovely.

Sorry to hear your struggling with a diagnosis. It is the hardest part, to get someone to listen to you. I'd go back to the doctors. Ask if anyone in your surgery practices anything gyno related. Even contraception related as that's what I did. I spoke to the locol doctor who studies contraception and I told him I thought it was endo and he agreed with me and put in my referral and yes I did have endo as recently had the surgery for it. Don't ever feel like it's in your head. You know your body and you know when somethings not right. Keep pushing, you'll find someone who will listen! Big love to you, as my symptoms were similar to yours so I know how you feel ❤️

[Lejay]

Sounds like you are going through a hell of a time. I had similar issues when I was around 13/14 and a doctor put me on the pill Estelle to help my severe cramps, acne, heavy bleeding and boost my serotonin because I was badly depressed. The pill helped and made things better as I got older but then later in mid 20s to now (I'm 30) I was changed on different pill brands/doses because I was having issues with breakthrough bleeding, moods, and migraines. My migraines and mood got so bad i had to go off pill and try the implanon rod. Which caused really bad side effects and then I had to get it out after 6wks. The only positive with my experience of implanon is it prevented me from getting pregnant and I hardly had a period.

Then I gave my body a break from contraceptives and that's when i went back heavy period and bad cramps plus increase in severity of chronic pelvic pain that started 2 years ago. I've always thought i was just one of those girls who had bad periods. That was until 2 years ago when my chronic pelvic pain started which made my period pain unbearable and this was when I was still on the pill!

I actually had ovulation pain earlier this week for the first time ever because i am now off contraceptives. The pain was so bad i had to shake myself out of fainting. I am not looking forward to my first period off contraception! I'm going to need a leather strap to bite in between my teeth!

I am still in the process of getting a diagnosis. I am seeing a gyno in a few weeks. But honestly, probably the only reason why I am now wanting further investigation is because of the chronic pelvic pain and other symptoms that has become severely debilitating for me. If i didn't have this pelvic pain and I was still the same as I was 2 years ago, just suffering from migraines due to pill and finding the right contraceptive, I wouldn't have bothered to discuss more with my doctor about my history of bad periods before the pill. Mostly because they dismissed it and said some women just get it worse than others. It sounds so bad but that's what we are led to believe from such a young age! It's horrible.

I don't wish on anyone what I've been through and am going through.

I know the doctors push the pill on people with these period problems but there has to be some investigation especially since not all women have these issues!

[Faybee87 in reply to Lejay]

I had similar experiences but eventually got lucky with a great gp who used to be a gynae who suggested it might be endo. If I were you I would book an appointment and tell them that I think it is endometriosis, and not leave until they referred me for at least a transvaginal ultrasound. I would make a point that they cannot rule it as being all in my head until they have ruled every other possibility out. They might be able to see cysts from a TV ultrasound that could give you some ammunition. This is how I got referred to a gynae, even then she just wanted to put me on the pill (she lied about our conversation, I said I'd try the pill until I got a lap and she referred me back to my GP saying I'd just agreed to go on the pill, my gp was livid), so I got referred back to her and told her I wanted a laparoscopy because I wasn't taking the pill until I knew what I was taking it for. She agreed straight away but I'm not sure how much of that was down to my GP getting in touch with her as he had worked with her previously. In hindsight I would have changed gynae after the first appointment to an endo specialist and I'm going back soon to request a referral to Birmingham Women's hospital. Sadly we need to be our own advocates with this illness until people catch up, but if you can find an understanding gp and get them on side it makes it a lot easier.

[MaryLou11]

Hi chars,

So sorry to hear what you're going through.

I paid for a private mri scan (about £300 - expensive but was worth it for me) which was able to confirm I had endometriosis. I think you can be diagnosed via mri if your endo is more advanced (small patches don't show up).

Also I resisted the pill due to similar reasons (hormones affected my moods) but eventually had to go on the pill as monthly periods were causing too much damage. Thats one thing i would do differently in my endo experience is go on the pill earlier to prevent damage to other organs because its hard to reverse, even with surgery. Try different pills, for example microgynon made me crazy (its the cheapest so gp's give it out). I found cilest and dianette both agreed with me better. Or you could as to try hormone therapy, such as prostap.

My advice would be go on the pill/hormone treatment now, and keep pushing for a diagnosis. Once you've got that you can work with the doc to put a plan in place for starting a family (if its endo you have it sounds like surgery might be an option for you)

good luck & take care