Suspected adenomyosis as well as inflamed, red, cervix. STRANGE maternal-side family history.

It will take me an hour to get all this right, I swear.

Okay.

My aunt had endometriosis very bad, I don't know the details apart from that. She has 2 children and I don't know at what oint she developed this.

My mother was toldshe had Pelvic Inflammatory Disease about 2 or 3 times. Was told she probably wouldn't ever fall pregnant because of it. This was around age 16/17, etc. And she also had polycystic ovaries at this point I think.

She had me and my brother. Some point in between or around then she was MIS-diagnosed with adenomyosis due to her myometrium swelling or something.
They performed an ooferectomy and an hysterectomy, and examination of her removed uterus showed that it was normal, and they made a huge mistake. By the time they were going to operate on her, her appendix was about to burst and they didn't know it was going to happen because her pain she described was in her back (I forget the name, some other type of appendicitis with a name pertaining to the posterior side of the area).

Her symptoms though were not related to the appendicitis  until the last 18 months of her ordeal. Before that, things were definately wrong.

She came very close to developing diabetes at the birth of my brother and doctors have described some unknown link between polycystic ovaries, endometriosis, and developing diabetes. It's not known about but it happens a lot.

The problem was that she had everything removed, and they never found out what it really was, because it wasn't adenomyosis.

My mother's liver and heart and uterus were just always a bit bigger or a bit misplaced, it was normal for her and they misdiagnosed her because of her uterus looking like it had adenomyosis in it.

Messed her up pretty bad because she was only 22 and wanted two more children.

Anyway, now it's my turn.

I am 18, and started taking the pill when I was about 14/15 because of heavy, painful and irregular periods.
Occasionally, I would bleed whilst taking the pill (not the placebos) and a coupe of times it lasted an unusual 10 or so days.

Once i bled for 3 weeks, and was switched to the highest dose of Microgynon (the pill) : 50mg, to hopefully improve my situation.

The pill never subdued pain like it was meant to, and only regulates my periods when it feels like it.

Once i had a common bacterial imbalance infection that went away with antibiotics and cream. I was then checked for pelvic inflammatory disease and polycystic ovaries and was cleared of it.

3 weeks ago I had skipped 2 periods on the pill (which goes without a hitch normally, and i have skipped upto 4 before with no problems) when I started to bleed the day after giving 0.6L of blood at the blood bank (how convenient for my history of anaemia)

The blood was heavy and normal looking, and after a week and a half of normal-like period, it went to bright red, what seemed like pure blood with no mucus thickness, and the would have chunks of blood clot in it, and then would be dark brown and thick again.

My heavy, painful period has often changed texture like this before. This time though, I bled for 2 n a half weeks (stopping only yesterday) while still taking 50mg of microgynon every day as normal.

I started seeing my doctor as soon as i started to bleed out of time. He took my blood, urine, and wanted to wait for the period to stop before he took vaginal and cervical swabs.

The blood & urine was clear of everything. AIDS, chlamydia, the bacterial infection I had before, etc.

I had an ultrasound a few days ago which showed the following (direct quote):

"PELVIC ULTRASOUND

A transabdonimal and transvaginal scan was performed.

The uterus is of normal size and anteverted. It measures 69 x 45 x 49mm.

The anterior myometrium appears normal and homogenous. However, the posterior myometrium appears heterogenous with a bulky appearance suggestive of adenomyosis.There is poor delineation of the endometrial/myometrial border.

The endometrium has a thickness of of 4.3mm.

Both ovaries were visualised and appear normal. The right ovary has a vulume of 3.4cc andthe left ovary has a volume of 2.2cc.

No evidence of of free fluid or adnexal masses."



So yeah.. I don't know if it's just because my myometrium is always like that (like my mum's was) or whether it really is adenomyosis. And if it's the same as my mum and it's not that, then WHAT THE HELL IS THIS?


The doctor did vaginal and cervical swabs, and told me he could see that my cervix was red and inflamed. He said it could be due to something that happens with healthy semen, and how it agrovates the area sometimes which is one of the causes of cervical cancer? I have had all of my cervical cancer shots though....

anyway,  I haven't been with my boyfriend for about 3 weeks so surely it isn't inflamed from the semen, and is most likely (and he agrees, 'Cervical Ectopy' which doesn't really cause many problems on it's own and can be fixed with cryo freezing the flesh there..
(COINCIDENTALLY I started bleeding the day after he left and the sex ceased?? I don't know if this could mean anything?)

Anyway. I have pain after orgasms about 70% of the time, especially lately, that starts about 5-20 minutes after an orgasm and lasts 5-20 minutes.

Sorry if this is TMI, but my boyfriend and I had sex about 4 or 5 times one morning/day and when i got up and went to watch TV with him, the pain (like extremely bad and sharp period pain) was crippling, like never before. So i've guessingly concluded that the more orgasms = the more pain.

I read somewhere that this can be happening during my orgasms and because the pain receptors are turned of during orgasms, that this is why i dont feel it for a while after.

I sometimes get period-pain like pains randomly even hours after orgasm, only usually very mild, but still annoying.

Also, I usually get gas and gas pains during the start of my period which is definately related, and the same hapened to my mum, I dont know if everyone gets that.

I'm now also anaemic because of my blood loss.

i am seeing a specialist but not for another 2 months... I will be referred for a laparoscpy then.

PLEASE HELP ??

[91becca]

i thought at least some people would reply to this :(

[protea]

WOW!!!!!!!!!!!!!!!!
I thought I had a complicated story.I really feel for you.Maybe you need to find another dr soon.All the bleeding does not sound normal.I hope you find some relief soon,HUGS.

[Lil1226]

It definately sounds like you have a lot going on.  The heavy/long bleending is certainly not normal.  Make sure they don't make the same mistake as they did with you mom.
I was diagnosed with endometriosis about about 3 months ago and had a laparoscopy to confirm it on 3/19/10.  My issues started when I was 14 and I was put on birth control pill at that age.  Which "masked" the issue until about 18 moths ago.  I had to stop taking birth control due to severe migranes (migraines).  Then came all the issues... severe pelvic pain, bursting hemrrhogic cysts, pain when urinating and deficating, etc, etc.
I, too, have pain during and after sex.  I pretty much have pain 25 days out of each month.  I was so happy after they did the laparoscopy (which hasn't even been a month).  I felt better (pelvic pain wise) right after the surgery since the doc had removed all the endometrial implants.  Sadly, I'm pretty sure the endo has grown back.  For the past 8 days I've been in constant pelvic pain with with occasional stabbing.  Seeing the doc on thursday for a post op apptm... we'lll see what she says.
It sounds like the endovaginal ultrasound had a lot of information.  If you a lap schedule, that is probably the best way to fifure out what's going one.  I know it's much easier said then done, but try to stay calm.  Technology these days is a lot  more advanced then it was10/15 years ago.  I'm confident they will figure out what is going on with you and do what's appropriate.
Very important:  Make sure you're confortable with your doctor.  He/she is your best source of information.  It's imperitive that you have a good relationship.
Keep me posted... best of luck

[91becca]

Didn't use this website as much as I thought I would. My laparoscopy/hysteroscopy was performed June 4th last year, and I was diagnosed with stage III endometriosis with adenomyosis and he had no idea whether my cervix was being weird on its own or whether it's secondary from the endo stuff.. I went through medically induced menopause with synarel nasal spray and oestrogen patches for 6 months. Horrid! I have so much empthy for women experiencing menopause now... Hot flushes aren't *oh just a hot flush, giggle giggle* they're like, *IM ON FIRE, GET ME INTO A POOL* heh.. and yeah not to mention other things..

Now I'm just on Microgynon (Levlen) 30 every day, no placebos, until I wanna have kids or start bleeding again. Pain is manageable and I've developed lactose intolerance oddly, but apparently I had it as a child and it can come and go. I can opt for another laparoscopy in 6 months from now to see if it's grown back much, but I'll decide that later.

[protea]

I also had a surgery in June 9th last year for the endo and then in about august an endometrioma formed on the ovary that was left.Since we were done having children anyway as I had a hysterectomy in Oct 2008 I decided in Dec last year to have my last ovary and tube removed.I have never been happier.I never have pain anymore and I am so happy I did it.I am taking HRT as I am in surgical menopause but I am taking vivelle dot.Its a patch that you change twice a week and I have no signs of menopause at all.No hot flushes nothing.I am so happy.

I really hope you find some comfort through all of this.If you want the surgeon that did my endo surgery is Dr Charles Koh in Wisconsin.He is the best.He flies all over to do surgeires and people fly to Wisconsin for him too.I had no endo in me when I had my last surgery.An endometrioma is different.Its another kind of cyst.