I'm new here...

[Annie-P]

Hello

I've just discovered this forum today, just when I needed it! I've suffered horrendous pain & symptoms for years & finally had my first consultation last month. I haven't been diagnosed with endo as yet, the consultant mentioned Adenomyosis but wrote Dysmenorrhoea on my prescription. I was offered 3 options to choose to control my hormones (I've chosen to try Microgynon as I've read the coil can make the pain worse). I left the appointment so disappointed & upset that I'd been sent away with what feels like something fairly trivial compared to the pain I'm in & the affect it has on my life. I felt I was a step further on when I managed to get an appointment after many years, but felt no further on afterwards!

I was wondering what other people's experiences are in getting a diagnosis?

Thanks for reading x

[-ALiViA-]

Hiya

I started my periods when I was 11 and they were horrible heavy painful. I missed school a fair bit.

When I was 19 I was going on holiday and didn’t want a period so I went on microgynon.

I’m now 29 and only for the last year have I started to get more symptoms of endo.

My doctor thinks I always had endo but for 9 years the microgynon suppressed it.

It certainly made my bleed lighter from 7 days down to 5 days. The pain was 5 days down to 2 days.

So maybe microgynon helped me for a while.

I’m not saying it’s a satisfactory prescription for you though. As in my head I’m concerned I’ve potentially had endo for 18 years.

I’m not sure what to suggest sorry but that’s a little bit of my experience with microgynon and endo.

[Annie-P in reply to -ALiViA-]

Thanks for your reply, it's helpful ☺.

I hope all goes well at your pre-op meeting x

[MichelleOlivia]

From me suspecting endo to me getting a diagnosis was quick. However we suspect I had had it since I was around 12/13 when I was diagnosed with ibs. I stopped taking the pill after taking it for 10 years, this was 3 years ago. The reason being to try for a baby. I started with what I now know to be ovulation pain...I'm talking severe, feels like my ovary is going to explode, can barely walk pain on one side for about 3 hours when I ovulate. After about 6 months off this (that I thought nothing off and didn't report to my gp as I researched that ovulation pain is fairly normal), I started to get severe pelvic pain from after ovulation to the start of my next cycle, this would be worse when going to the toilet. I did ask a gp about this after a few months of it, and she just shrugged her shoulders. After a year of unsuccessfully trying to get pregnant I mentioned these pains again to my gp and after doing some internal swabs to rule out infection referred to me a gynaecologist. I was seen by him after 2 months wait, and he told me there and then that I have endo, he was 100% sure but would have to do a laparoscopy to diagnose officially and to treat. I was given an appointment for the next month, but had to cancel as I found out I was pregnant. I went on to loose the baby and after recovering from the miscarriage asked for a re-referral. I didn't need to see the gynaecologist again and was just booked straight in for the lap that happened about 2 months after referral. I was diagnosed there and then.

My endo was moderate, with scaring and nodules and this is why he thinks I've had it longer than I've had the pain. I think for me the pill probably masked a lot of the symptoms. My understanding is that excision of the endo is the best and most effective treatment. I'm 8 days post excision now and already my back pain has gone, I have just had a period with no clots and no pain!! I still have pelvic pain, however my lovely endo nurse explained that everything is still inflamed inside from everything that was excised, which I have learned was most places, and this should settle soon.

Good luck in getting your diagnosis and treatment xx

[Annie-P in reply to MichelleOlivia]

Thank you for your reply, it's good to hear you were diagnosed quickly & are receiving the treatment you need. I didn't want to take the Pill as I didn't want to just mask the symptoms as you say. I'll speak with my consultant next month.

I hope you're recovering well xx