Possible endometriosis/early stages of diagnosis. Newbie.

[KWJ2]

Hi there,

I have never written on any sort of forum but I was inspired to share my experience and thoughts in case someone can offer advice or maybe I could help someone in a similar situation.

I am 27 years old and until about 3 months ago I thought I had 'normal' heavy painful periods. I have always suffered from lower back pain (minimal pain in the front) in the lead up and throughout my period. I would describe my periods as heavy for 5 days and then lighter for first day and last 2 days (about a 7-8 day period).

More info to know-

- light bleeding after intercourse but not everytime.

- one or two bouts of UTI a year

- and suffers from cystitis (following intercourse) since I was 16, but I know the signs and follow a routine to try and prevent this.

- had copper coil inserted summer 2013 (didn't want hormones even though I know copper coil isn't ideal for heavy periods)

-before that I had 2 years of no contraception and prior to that about 7 years on microgynon pill

At the start of the year I had horrific pain on about the 3rd day of one of my periods which lasted a week or so, I went to the doctors who referred me for an ultrasound and he did an internal pelvic examination when my period had stopped. He found what he thought was a polyp which could have been the reason for bleeding after intercourse but didn't think that would cause the pain.

Ultrasound- had to have an internal US because I have a 'tilted' uterus but they saw nothing of concern.

1 week later my gynaecology appointment came through and he wanted to do his own ultrasound (internal) and this showed a small cyst on my left ovary (5cm) and he said some evidence of adenomyosis and he felt with my symptoms it could be endometriosis. He also said that the polyp my GP found was in fact an ulcerated area (can't remember the proper name) which could be treated with heat? Or silver nitrate stick? I should have asked more questions about this but I was finding all the info hard to follow.

He removed my coil and has put me on the pill (micrognon) for 3 months to be taken as normal not back to back and then I have a check up at the end of April to see if the cyst and ends/ adeno has reduced from the hormones. Also he said I can decide on how to treat the ulcerated area at the same time.

I wasn't keen to go on the pill as I believed it caused me a reduced sex drive and made me feel 'down' (I can't say I had depression but fed up and felt really low at times) the last time I was on it.

So that's where I am now! I am on the first pack of pills and still bleeding lightly (day 12) and I have a nagging ache in my pelvic area and back, I also get achey in my hips too. It feels likes I just more aware of the aches and pains because I'm sure I was like this before but just didn't link it to anything. I'm not one to make a fuss but when I think back I have had signs for years really! I have always had pain in my lower back come and go and I have low iron levels too (not sure if related)

I would love to know if people have had a similar experience or if they think I might not have endo at all? or any info on adenomyosis as I'm not too sure the difference?

Thank you x

[crochetpanda]

Hi there,

I am in the process of researching my pains with the GP - I've been in and out of hospital since October trying to determine what is wrong. All of your symptoms are the same as mine, especially the UTI's and spotting after sex / at random times of the month etc. I am convinced that each UTI gets worse! I too was on Microgynon but after a few months it turned me into an utter dragon - hormonal, temperamental nightmare! I now take Loestrin back to back and it is a much kinder pill for me. Sorry to talk about myself, I just wanted to share it with you and to let you know I am suffering the same way too.

I really hope you get some answers and pain free / reduced pain days soon xx

[Tboag]

Hi there, adenomyosis is the same as endo but the cells grow inside the muscle/wall of the uterus, I'm just waiting for my laporoscopy which is the only way to truly diagnose endo, to hopefully confirm endo or Aden, I say hopefully because nothing has shown up any where else and I'm really fed up with knowing something is wronge but don't no what, my gyne said it sounds like endo but signs of Aden when given internal, I've always had painful periods not heavy or long, and pretty regular although closer together now about 22 days, ive found sex diffeicult for a while now, mainly after pains and aches in pelvic area, but now I'm in daily pain like i used to get after sex, some days worse than others, I'd say 2 weeks from ovulation to just after period being the worst, but not an exact science, pelvic hip back and groin areas not all at once, even on a good day I can feel something's not quite right, my pains get worse as the day goes on and are more intense if I've been busy, hope this helps, and good luck,

[carrie2202]

Im not sure to be honest, the pain from my endometriosis completely cripples me and I can hardly think. Mines more prominent at the front, however i was diagnosed in dec 2014 with very severe endo via laparoscopy and now awaiting major surgery to try and fix. Long and short of it is all my internal organs have fused together like a football and I bleed a lot internally into my abdomen. My bowels also bleed around that time of month. However always rely on your gut instinct, if you feel something more is happening, pester your GP x

[carrie2202 in reply to carrie2202]

Just like to note I am quite susceptible to cystitus, but dont experience painful sex or spotting.

[KWJ2]

Thank you so much for your replies.

Crochetpanda it sounds like our symptoms are similar so I hope you get your diagnosis soon.

Thanks you Tboag for explaining aden to me, I hope your laporoscropy goes ok.

Carries thank you for sharing your experience too, I really hope your surgery goes well. It sounds like you have been suffering tremendously so well done.

My bleeding has become more heavy and I'm on day 13 of taking the pill so I'm really not impressed with this initial cause of treatment but I'm determined to stick with it.

Thanks again for your replies and in advance for any in the future x

[Carleyjayne93]

Hello. I'm 21 im currently going through the same. I'm waiting to hear back after being referred for endometriosis testing. I have also had ultrasounds and found I had a tilted womb and also a cyst on funnily enough my left ovary! They found I had a cervical ectropion in the neck of my womb which I'm guessing is the ulcer thing you mentioned that they treated with some sort of chemical. It a nightmare as soon as you think it's sorted they then tell me I've got to go and have something else done. It's a long process but in the end we will get some answers x