Age 54 with Adenomyosis

April 15, 2004

Hello! I'm new here.

I am looking for an alternative (to hysterectomy) treatment for

adenomyosis.

Does anyone have any knowledge of and/or experience with an

alternative treatment?

Have any of you sought specialized surgical treatment and traveled to

a physician located in another part of the country from where you

live because there is no one in your area who does the procedure?

If so, how do you accomplish a " credibility/track record, etc. " check

on the physician, beyond confirming his/her status with the State

Medical Board?

I have done considerable research into hysterectomy and nearly ALL

the information I have found is unfavorable. Yet, I have not found

one person that I know or that anyone I know, knows, who has

experienced any of the many possible adverse side effects after

hysterectomy. Yet,I am finding it difficult to accept hysterectomy

because of the negative information out there and also because I need

to know it is either the BEST or ONLY option for me.

I would so much appreciate any help from you!

April 16, 2004

First, are you having any symptoms? If you're not having symptoms

you may not have to do anything at all. Are they sure it's

adenomyosis and not a fibroid in disguise? Are you diagnosed with

only adenomyosis or with both adenomyosis and fibroids? Are you

showing any signs of menopause? If you have a combination of adeno

and fibroids, UFE may be an option. A lot depends on your symptoms,

how close you are to menopause, and how all of this is effecting

your quality of life.

Gerri

> Hello! I'm new here.

>

> I am looking for an alternative (to hysterectomy) treatment for

> adenomyosis.

>

April 17, 2004

Hi Kathy

Just to set the ball rolling on this topic....

I came across mentions of Adenomyosis when researching fibroid

treatments and how sometimes it turns out fibroid patients have

something else mistaken for fibroids, such as Adenomyosis. I've seen

it mentioned briefly in fibroid books, but not in enough depth to be

useful to you.

It sounds like fibroid symptoms are similar to yours and you should

therefore find a lot of handy information on symptom

relief/products/strategies on this site. As with fibroids it sounds

like Adenomyosis sufferers can go through the same path of looking

to control the problem with less invasive methods and making

hysterectomy their last resort. Unfortunately, it seems you don't

have as many options available. Get somebody good who is up on the

latest research, (but sensible and cautious too) whatever treatment

you go with. UAE and surgical reconstruction look like two possibles

to explore. (Make sure that 'surgical reconstruction' isn't just

someone re-packaging a myomectomy under a fancy name). A lot of web

sites will promise the moon on a stick, but remember hat they are

advertisements. The person with the best web site isn't neccesarily

the best surgeon!

Here are some thoughts for places to search that might yield

something:

____________

*It might be that some of the good fibroid books have an information

address for Adenomyosis support and advice in the back list of

addresses.

*In the UK you could do a web search for the women's health and

sisterhood network sites contact details and they may have useful

information on this to pass on to you. (London Fibroids Charity)

* There's a site called PubMed and it will come up on screen just by

searching that name, but someone has kindly just posted the address

(Yesterday or today inside their post - it has a search keyword

feature.)

* Try the links from the NUFF fibroids (US Charity), Carla Dionne's

own site links and links on the other forums. These tend to list

various other conditions and associated problems and you may well

find Adenomyosis listed.

* Carla's book cites Adenomyosis sufferers Host delphi forums

http://www.delphi.com/adenomyosis/start. Also Adenomyosis Host

egroups, http://www.egroups.com/group/adenomyosis

*Royal College of Obstetricians and Gynaecologists bookshop, 78 Park

Road, London NW1 0 (and Amazon and Sisterhood Network

online books)

* Obyn.net and netdoctor.co.uk type sites and NHS Direct, if in the

UK

* Are there any other names for Adenomyosis it might also show up

under on a keyword web search?

* It may have cropped up before and come up on an archive search on

this site or other fibroid site forums such as Yahoo's 'embo' group,

Smartgroups UK and Ireland' and 'The Fibroid Place'. . (Keep hitting

next to go further back in the records.)

* Women's general health books accounts will be brief, but they may

say something very useful. My turquoise covered Miriam Stoppard

@Women's health book doesn't seem to have this condition in the

index, but it does talk about other gyn conditions and treatments

which might be applicable. Nope, it's not in the index of my 'Which

Guide to women's health either...(I hope I'm spelling this condition

right.) Some fibroid books don't have an index.

* Lark MD has written about diet and alleviating fibroid

symptoms. It may apply to some of your symptoms too.

* Carla Dionne's great book 'Sex, Lies and The Truth about Uterine

Fibroids'has a lot of information you could apply to your problem,

such as symptoms,treatments like hysterectomy and the

alternatives,finding a good doctor etc. In my edition (2001)

there's just over a page (page 126) on Adenomyosis. Carla is on this

forum too. I'd definitely read this page. She talks about the

promise of alternatives to hysterectomy being explored, such as UAE

and uterine reconstruction. It sounds like it's early days with

applying these things to Adenomyosis, but it seems well worth

looking into those, to see where the medical profession is now at.

*Ladies oin this site can point you in the direction of surgeons and

radiologists they think well of or have heard of, for your area. I'm

in the south of England and on the Smartgroups UK board too for

example.

* On p. 29 of Claire Mason's book 'Coping with fibroids'

there's a paragraph about this condition. (White cover, black spine,

the sort of book you see in UK health food shops and I highly

recommend this one to fibroid sufferers, esp in the UK). It says

that the condition is treated with hormones, which are used to

shrink the tissue. I don't know if I'm allowed to quote chunks of

books or not online.

* The 'What your doctor may not tell you about fibroids' book by

Goodwin, Broder and Drum (2003)has different page refs on

Adenomyosis (Terrific fibroid book). An MRI is one of the few tests

that can differentiate fibroids from Adenomyosis...or with

specialised ultrasound techniques, it says on page 39 and 43.

Mostly the relevant diagnosis and treatment info for this is on page

43. It echoes what Carla's earlier book said. UAE sows some promise

for the condition and you can use less invasive treatments first for

symptom control, making surgery the last resort. Hysterectomy is

usually the surgery of choice, it says.

*Apparently it's possible to have fibroids and Adenomyosis together.

* Medical textbooks might give you clues as to suitable and

unsuitable treatments if you have no luck on the forums

* If you can find out from your doctor which treatments he thinks

are appropriate or inappropriate and why for this, we can then send

you further info on those treatments if they're ones we know about.

See Carla's book if in the US and there'll be something on that in

the archives somewhere here. There's a recent smartgroups thread on

this for UK patients. It isn't always easy.

As with the UAE< I'd talk to the women who have actually had the

procedure on the Hyst and embo forums mentioned in the links. Bear

in mind everyone's experiences will vary a lot. I'm sure many people

feel just fine after their hysterectomies. Sites and books are

endeavouring to make women aware there are (for fibroids) different

options. The intention isn't to scare-monger on any treatment or

aspect, but to try to get to whatever the truth is. Hysterectomy can

provide a blessed relief from symptoms that are horrible to live

with. (It's just that in the case of fibroids, the myomectomy option

can also do that.)

Look in on the Sans Uterii and Hyster Sister sites, I've heard

mentioned, if you haven't already.

Why have I written this long epistle? I got up earlier than everyone

else this Saturday morning!

Aztek

April 17, 2004

Wow! thanks for all the info, Aztec! I will be doing some serious

checking into your many resources. Some of them I am familiar with, a

number of them are new to me.

Below are two " reply " messages I sent yesterday and forgot to check the

" reply to all " button so I don't think anyone else got then. For yours

and anyone else's info, I have copied them here, as they explain in

greater detail my situation.

1) I have been feeling somewhat helpless in the sense that I have

located and consulted with a physician--also in Bryn Mawr, PA!--who

offers the best resolution which is removing the adenomyosis and

reconstructing the uterus. It is a different procedure than

myomectomy--he says he developed the procedure and is the only one who

does it. I do not have fibroids but I do have hyperplasia and have a D&C

scheduled next week to address that condition. If no pre-cancer or

cancer is found , the physician I am consulting with said he would remove

the entire endometrial lining, as well. He says after surgery, my uterus

will be normal size (it is now 14 weeks) and will function normally, i.e.

continue to provide blood to the ovaries, contribute to hormone

production, etc. That is the end result I desire, of course.

The dilemna I am facing is that although I have checked out his board

certification and medical license, I have no way of learning anything

more about him and that makes me nervous. Also, he has suggested an

unconventional method of payment that is a bit of a red flag to me. I

would be traveling from Iowa. Would you mind sharing more with me about

your experience? This physician (Dr. Toaff) said I would only

spend two days in the hospital. I find it hard to believe that I will

feel well enough to get on a plane and make the trip back (likely alone)

so soon after major surgery. I haven't gotten into the particulars with

him regarding the surgery yet, because we're waiting for the D&C results.

I suppose maybe he would require me to stay in town for a week or so for

follow-up. If the D&C results indicate this surgery is an option, I

would like to investigate him and his services further. How did you

check Dr. Glassner out before you made a decision? My only option I am

aware of outside of this specialized procedure is hysterectomy

(recommended by my two physicians here). Because the adenomyosis is

diffused, my understanding is that myomectomy would not be suitable.

2) My only symptom is an enlarged uterus (14 weeks). Although I do have

endometrial hyperplasia that also needs to be addressed. I'd like to

just wait it out until after menopause--I'm perimenopausal at this time.

However, I have been told that the uterus is causing displacement of the

other organs in the abdominal cavity, and I know it's putting pressure on

my bladder and rectum. I have also been informed that the uterus will

never shrink back down, but will likely continue to grow.

If anybody has any different information regarding any of this, I'm all

ears!

April 17, 2004

Hi

I was going to ask what type of adeno you had, as mine was focused

and was mistaken as a fibriod, then I read your second post. I did

indeed have fibroids as well and I also have endometriosis, was

there any mention of this possibility? Alot of women with adeno

have endo, but how were you diagnosed with your adeno. Only a lap

can indentify endo and only then possibly adeno, but the only real

way to positively identify it (adeno), especially the diffuse type,

is after hysterectomy.

Also I have been told that there is no cure for endo, hyst will

solve adeno problems such as pain and bleeding, but will not

necessarily help you with the associated endo problems if you have

that too.

Cant hurt to do some research on Endometriosis as well, you might

find some interesting information on some of those sites.

Bree

April 17, 2004

Hi

I was going to ask what type of adeno you had, as mine was focused

and was mistaken as a fibriod, then I read your second post. I did

indeed have fibroids as well and I also have endometriosis, was

there any mention of this possibility? Alot of women with adeno

have endo, but how were you diagnosed with your adeno. Only a lap

can indentify endo and only then possibly adeno, but the only real

way to positively identify it (adeno), especially the diffuse type,

is after hysterectomy.

Also I have been told that there is no cure for endo, hyst will

solve adeno problems such as pain and bleeding, but will not

necessarily help you with the associated endo problems if you have

that too.

Cant hurt to do some research on Endometriosis as well, you might

find some interesting information on some of those sites.

Bree

April 17, 2004

Hi

I was going to ask what type of adeno you had, as mine was focused

and was mistaken as a fibriod, then I read your second post. I did

indeed have fibroids as well and I also have endometriosis, was

there any mention of this possibility? Alot of women with adeno

have endo, but how were you diagnosed with your adeno. Only a lap

can indentify endo and only then possibly adeno, but the only real

way to positively identify it (adeno), especially the diffuse type,

is after hysterectomy.

Also I have been told that there is no cure for endo, hyst will

solve adeno problems such as pain and bleeding, but will not

necessarily help you with the associated endo problems if you have

that too.

Cant hurt to do some research on Endometriosis as well, you might

find some interesting information on some of those sites.

Bree

April 18, 2004

We started with an ultrasound w/transvaginal, then a cat scan and most

recently MRI. I have a laparscopic exam along w/ D&C scheduled this week

Until the MRI, it was believed that I had a fibroid tumor, also, but

the MRI specifically indicated no fibroids. I was told that the " mass "

thought to be a tumor is likely a concentrated area of the adenomyosis.

The MRI report read " diffuse adenoymyosis " . No mention with any of these

tests of endometriosis, nor do I have symptoms of endometriosis. Very

fortunately, I don't even have symptoms of adenomyosis, other than the

enlarged uterus. The purpose of the D&C is to rule out edometrial

cancer, as my endometrial biopsy indicated hyperplasia. With the

laparscopic exam that will be done at the time of the D&C, I am hoping to

mabe learn more detail about just what all is going on in there. If

there is no cancer and no other issues to be addressed, then my next step

will be to choose between hysterctomy and alternative surgery--which is

why I am here at this website--I am on a fact-finding mission about

alternative surgery, which is neither recommended nor an option here,

where I live.

April 18, 2004