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Unread 08-28-2005, 08:27 AM

Hi all
I am really interested to hear from anybody with adenomyosis.
I have been having too frequent periods, sooo heavy and with clots, and sometimes bleed inbetween periods. I also sometimes have spotting or bleeding after sex.
If that was not bad enough!!!! I also suffer sharp pain in my lower abdomen at almost any time in my cycle which can last for days or weeks, it is like someone is cutting me inside, it is horrid and has put me in a&e twice such is the severity.

My Gyne thought I had endo' she did a lap and ultrasound but found nothing, so she just wrote me off with no further investigation saying the menstrual problems were do to my time of life (I am 46) and she recommnended I see a psycologist for the pain

I went for a second opinion .
This new Gyne says I have 'likely', dyfunctional uterine bleeding, and although he found no fibroids and said my uterus was of normal size, he did describe it as 'Bulky'!
I am awaiting the biopsy results he took during the examination, and I am also awaitng a hysterectomy (with ovarian removal due to family female cancer issues).

What I really would like, is for someone to put a name to whatever it is that is causing all my problems.

I checked out this conditon, after finding it when looking up 'Bulky Uterus', and I see almost all of my symptoms (apart from an enlarged uterus, although my last Gyne said I did have an enlarged uterus! )

From what I have read, I may not even find out if I have this until they check the uterus afer it has been removed .

I just wondered if anybody else had any of the symptoms I am having, or may know anything about this condition
many thanks
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Unread 08-28-2005, 10:04 AM

Hi Eastbourne,

I had the same symptoms. My GP found nothing on an ultrasound and told me to wait for Menopause--yeah, right--15 years????

After 3 more years, I nagged and nagged to get a referral to a GYN--and my ultrasound and hysteroscopy were both normal. He diagnosed Dysfunctional Uterine Bleeding, and gave me a choice of Hyst or Endometrial Ablation.

After my hyst, he told me everything looked normal. I felt sooo GUILTY. Obviously, I must just be a big hypochondriac.

At my 6 week check up, the Patho report revealed Severe Adenomyosis. It explained all my symptoms, and, from what I have read, IF I would have chosen the ablation, it would have made the clotting and cramping WORSE! The scar tissue from ablation traps the blood and stuff within the muscular walls of the uterus, and that adds to the problem.

If you go onto the post-op forum, and search "Adenomyosis" you will find some interesting posts from other "undiagnosed" sisters. Also, look in the articles and resources, too.

Hope it helps to know you are not alone,
Unread 08-28-2005, 07:24 PM

You are definitely not alone.I too have adeno, diagnosed by internal ultrasound. Heavy irregular periods, major lower back pain , cramping most of the month, heaviness in pelvic area, clots. There is no cure I was told except for hysterectomy. I never heard of this before either.
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Unread 08-28-2005, 08:14 PM

This is correctly diagnosed pre-surgery less than 15% of the time. My hyst was scheduled due to several other complications. My doctor informed me after surgery exactly how bad it was. Adenomyosis is usually found during surgery being performed for other symptoms. If I understood correctly the best way to see this disease is an MRI and even that is iffy.
Unread 08-29-2005, 12:00 AM

well, I am also having these pains in lower tummy & rectum also. so sharp and shooting that I can't breath or even's terrible. Same clots, I actually bled through super plus tampons very 20 min all day friday....yep, 2 weeks can't come soon enough for my LSH...I think. Just want you to know you are not alone.
Unread 08-29-2005, 01:53 AM

Hi Eastbourne,

I had the pain, clotting, heavy non stop bleeding, enlarged bulky uterus, bleeding after sex and generally felt awful. I was put on large doses of provera to stop bleeding which didn't happen and I was also placed on synnarel as my doctor did diagnose me with adenomyosis. He asked after doing the internal ultrasound whether I had a tarry discharge after my periods which I said yes and he based his diagnosis on that and he was right.

Take care......Karen
Unread 08-29-2005, 02:36 AM

hi eastbourne

i had all the same symptoms as you plus bleeding heavily after intercourse, after two years of going back and forth to gyne, pain management center and driving my gp insane (he loves me really lol) i too was 'wrote off' but threw a stroppy on the secretary at the hosp (like you do lol) and got another appt to see the same consultants dept - this time i got the big boss not his understudies!! he decided that i 'probably' had adenomyosis and offered me a hyst, seeing both my cervix and ovaries were fine and healthy according to all the tests done i was booked in for a SAH (just the uterus removed but they also took several lymp glands!) 10 days ago.

when my surgeon came to see me post op he said it was adenomyosis and that the path report would tell me more and he'd taken some lymp glands for testing just incase!! (love how they tell you when ur groggy and full of morphine so u dont ask q's!!! lol) got my post op appt on 20th sept so hopefully i'll know then

ur name does that mean u live in eastbourne if so im just up the coast in portsmouth

its very frustrating when you cant get a definate answer, my gyne said the only way we could find out for sure was via the path results from the hyst (typical NHS wont pay for mri scans!!) but im so glad ive had op, im in less actual pain than before op even thou the discomfort and frustration of the slow recovery is starting to wind me up...lots lol

good luck with whatever course of action you decide to take, keep us informed
angel xxxx
Unread 08-29-2005, 03:17 AM

Hi Girls
boy does it feels good to find I am not alone, although I do feel sad that so many of us have sufferd through our Docs poor education on Adeno'

My symptoms
Knife like pain, just above pubic bone and sometimes up as far as my navel. Often mid cycle but also after sex.
Very sore abdomen, like being kicked by a horse, comes on without reason and can last a week or two, regardless of where I am in my cycle.
Too frequent periods.
Very heavy bleeding and clotting first two days.
That black tarry discharge at the end of periods, also some a week before period including spotting.
Bleeding and pain after sex.
Severe Migraines day before onset of bleeding.
Feeling faint for first two days of period.
My first Gyne put all this down to my age! 46 and said it was all normal, although she said I had unexplained pain, but apparantly many women do.
Now I know why?

I bet there are more symptoms I have mised here, but I have so many and more every month I just can't think of them all at once.

I just want it all out know, it's just a question of waiting for the NHS to give me a date.

My Daughter gets married mid November this year, I just hope they can do it real soon so I can attend without worry.

best wishes
P.S I am not In Eastbourne, it is just very dear to me, but I am in the UK.
Unread 08-29-2005, 03:42 PM

Could it be a result of Estrogen Dominance, in that the endrometrial lining grows very large? This occurs in women who have never been pregnant or only had children when they were young and have not been pregnant for a long time. Unapposed estrogen allows the endrometrial lining to grow very large. As I understand it this may precipitate the growth of fibroids, in that fibroids can start from the bulking of endrometrial lining.

I had similar bleeding problems and feeling faint as you did- it turned out that I had lost 40% of my red blood cells (my hemoglobin was 7.1 when it should have been around 13 and my hematocrit was 25% when it should have been 40%).

I've read that a growth in the endrometrial lining can lead to excess blood loss during periods, and that leads as well to iron loss. Then iron loss can prevent the endrometrial lining capillaries from healing properly once a period is supposed to end, so they keep bleeding, and thus you get more iron loss, and it becomes a vicious cycle...

Do try to get a complete red blood cell count soon to see if you are anemic- this can compromise your ability to even get a hysterectomy so you'd need to supplement with iron to get your red blood cells growing again. The situation is a vicious cycle with more and more red blood cells and the iron in them being lost as you keep bleeding more.

You probably would be a candidate to keep your cervix, and thus might want to consider keeping it- the two procedures that keep it are the LSH (Laparoscopic Supracervical Hysterectomy), and the SAH (Subtotal Abdominal Hysterectomy). You can click on my name and view previous posts if you are interested in the issue of keeping the cervix.

But do something about the bleeding right away- it will get worse if you don't, and make the situtation more of an emergency one.

Unread 08-29-2005, 05:09 PM

Hi Torrie,

I hope your post is read as it's a very good account. I actualy forgot that my initial bulky uterus was due to an estrogen overproduction for which they did a D&C for but I stopped bleeding for a week and it started all over again. I was so anaemic that my level was down to 5 hence why they delayed my sugery to build me up as well as my iron level as they said I'd been sick too long. At the time I was feeling nauseated all the time due to infection and unable to eat.

You are so right we should seek help immediately as it does get worse as I found out. I left my bleeding 3.5 months before seeking help which is why I got into such a mess. I just thought with my age things happen that way but I know now I was just to scared.

Take care............Karen

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