Adenomyosis Resection

[Guest guest]

I am widening my search for ANYONE who has undergone " adenomyosis

resection " for the purpose of removing adenomyosis from the uterus. No

fibroids or endo--just adenomyosis?

I have spoken to Dr. West and to Dr. Toaff and both say they have

performed this surgery successfully in the past and can do this for me.

I would love to have some supporting info from anyone else who has had

this done prior to making a decision to go for it. I've already posted

this question on the Adenomyosis Support Group board with no response so

thought I'd try here. As you may know, 99% of the medical field

indicates hysterectomy as the only " cure " for this disease.

Kathy

[Guest guest]

Kathy,

I only remember one person on this board posting about her outcome

with adeno. After a couple of years (seemed that long anyway) she

went with hysterectomy. It sure looks like you are charting new

waters here as far as the list is concerned (to my knowledge

anyway). Got to hand it to you for stepping up to the plate and

being first. Not a easy thing to do..... Good luck.

Gerri

>

> I am widening my search for ANYONE who has undergone " adenomyosis

> resection " for the purpose of removing adenomyosis from the

uterus. No

> fibroids or endo--just adenomyosis?

> I have spoken to Dr. West and to Dr. Toaff and both say they have

> performed this surgery successfully in the past and can do this

for me.

> I would love to have some supporting info from anyone else who has

had

> this done prior to making a decision to go for it. I've already

posted

> this question on the Adenomyosis Support Group board with no

response so

> thought I'd try here. As you may know, 99% of the medical field

> indicates hysterectomy as the only " cure " for this disease.

>

> Kathy

[Guest guest]

Kathy,

I had an adeno resection done by Dr. West a year ago this month. The only

diagnosis I had ever had, including Dr. West, was for fibroids. I went to Dr.

West after only being offered a hysterectomy for my fibroids. I had been

diagnosed over 10 years ago and had gone to many doctors, tried herbal remedies

and was even a vegan for over a year. Nothing worked and the discomfort, the

heavy feeling, back pain and a constant overall ill feeling was not allowing me

to have a life. The only symptom I did not have was heavy bleeding as

described by some of the ladies in this group.

Dr. West did find fibroids but my main problem was adeno which he found when

he started the surgery. He had to think on the spot and change the

procedure. He explained that he took most of it out but that it is difficult to

tell

where it begins and ends. it is not like fibroids. From what I understand, it

is endometriosis inside the uterus. I was 46 at the time of surgery and for

this reason he doesn't expect it to come back.

I can only say wonderful things about Dr. West. He is my angel. I feel

wonderful and I have my life back. I had gotten so used to feeling awful that I

had forgotten how good it feels to feel good.

It is not easy to make a decision about surgery or who to go to.

Fortunately, we have this group where we find support and information. Thank

you, Carla.

I hope this information has helped you. You can email me if you like.

Cary

[Guest guest]

Cary,

Thank you so much for your response! It means a lot to hear from someone

who has actually undergone the surgery with excellent results! I was

thinking if I did not get any response, I might ask Dr. West if he can

give me a couple of references of patients (although I don't know how

that could work due to all the confidentiality rules).

I am 54, so I believe the chances of recurrence for me are slim, also.

Did you have to travel to New York, or are you in the area? I would have

to travel from Iowa. I find it comforting that so many in this group

have had to travel great distances to obtain their surgeries and all

(that I've read about) got through it okay. I will have many specific

questions about logistics, etc. once I have made the decision to have the

surgery.

What makes my decision difficult is the fact that my only symptom is a

14-week uterus. I am small so this does cause frequent urination and

pressure on my rectum and round belly. I am VERY fortunate to not have

the many other horrible symptoms of this disease I have read about over

and over again on this message board. I am moved by the tenacity of

most of these women in the battle to preserve their bodies in the face of

the " enemy " (fibroids, endo, adeno, etc.) and the havoc it wreaks on

their lives. One of my fears is that I will develop the pain and/or

profuse bleeding at a later time, when I may not have the insurance

coverage that I do at this point in time. Dr. Toaff also made the point

that it IS a disease, it does not belong in my body, and may be causing

subtle problems I am not aware of. I have had lower back pain for a

number of years. I can't be sure adeno is the cause but would certainly

welcome the relief if so. You mentioned that you had forgotten what it

felt like to feel good. It makes me wonder if any of the changes I have

experienced with my body and automatically attribute to " aging " may, in

fact, be associated with the adeno.

I'm very happy for you to be enjoying life without the symptoms you were

forced to endure. Your success and the many other successes I have read

about are very uplifting and encouraging. I appreciate the fact that so

many women make the effort to share and contribute here for the benefit

of all who come looking for information and guidance.

Kathy