Endometriosis and Adenomyosis

Hi,
I am nearly 19 years old and suffer from endometriosis. I was diagnosed in June 2000 when i was 16 years old.
I have just had my 10 surgery, they have all been done as laparoscopys and I have either had the endo removed by laser or excisiosn surgery.
My last surgery was on the 19th December where more endometriosis was found between my rectum and vagina and my left ovary was stuck down by adhesions. I had a few weeks relief but the pain is not back. I am takiing the BCP continually to try and surpress my periods but I keep bleeding.
Since my last surgery my endometriosis specialist suspects that I have Adenomyosis.
I am in such severe pain, it is so excrutiating and I feel so unwell and I do not know what to do next. My periods are being surpressed as the endo seems to return very quickly and things just get worse and worse as I have periods. My periods are also so heavy, very long and are excrutiatingly painful. I also loose large clots.
I live in the UK but am so desperate to get things under control, my quality of life is awful and I really want to keep my fertility and have children but as Im in such awful pain I keep thinking about a hysterectomy, but it is not really a option at 19 years old.
If you have any advise I would be ever so grateful and may be contacting the center for more help.
Thank you very much,
Best wishes
Jacqui

Dear Jacqui-
Firstly let me say, you need to have an open surgery…many patients keep having repeat laparoscopies and the visualization of the pelvis is greatly limited with this approach. After so many attempts, I only perform the open technique in order to be able to see and treat the entire pelvis.
There is a good possibility you have adeno…treatment for this condition will often render the woman infertile. Adeno infiltrates the uterus and damages the uterine muscle..it prevents the organ from carrying a child, and many women miscarry in the first trimester. Although our laser procedure, will possibly make you infertile, it will significantly reduce your pain and your periods, and WILL give you your life back.We have treated many women in your same situation.
It is very important to keep your uterus….especially at your young age. Removing the uterus can cause irreversible hormone imbalance..necessitating replacment therapies which may not be effective and increasing the changes of breast cancer. Post hysterectomy many women also report depression, bowel and bladder prolapse-eventually requiring surgery, and most importantly no sex drive accompanied with reduced abililty to respond or have sensation sexually.
Please do your research very carefully.
I know FAS can help you and give you your life back.

Hi,
I am 35 years old and last year my GYN told me I have adenomyosis. On the ultrasound report it only states that I have very prominent blood vessels in the uterus. Could this be what made her come to that diagnosis?? No treatment has yet been done but I have such pain not only during that time of the month but all month long. I am also on BCPs and still spot in between. Please advise me if the prominent blood vessels she is seeing the adenomysosis. I also had an MRI and it did not show the adenomyosis. Thanks.

Kim from NJ

Dear Ink-
Many patient have enlarged vessels around their uterus..this is not adenomyosis. This disease is extremely difficult to diagnose accurately without visualization and a tissue biopsy-MRI’s are not always accurate.
One of the classic symptoms is severe pain throughout the month…which you have. Other signs are an enlarged uterus, heavy bleeding with large clots and painful sexual intercourse. Your gyn is probably diagnosing you based on your symtoms..as most doctors do.

Jacqui or any one else from UK please contact me
I am 35 from the UK. 2 voices must be better than 1

lavinia

laviniamartin@btopenworld.com

Hi, I am 27 and was diagnosed with endometriosis when I was 22 after years of searching and trying to find out what was causing my pain. I have had 3 laps to remove chocolate cysts and leasions connecting my ovary to the pelvic wall. I also have been on Lupron about 4 different times one before surgery and then after each surgery for about 6 months each. My pain is back. The pattern is that I have surgery in May and then by December or January the pain is back…then they do tests and then surgery in May. Well, this time, I have had to change drs due to a job change. I don’t have the history with this one, but she has ordered an ultrasound and to my knowelge from everything I have read…you can’t detect endometriosis by ultrasound. The results came back normal, but yet I have all of the same symptoms. My cycle is normally 28-32 days long and by about day 18 from the start of my period, the pain comes and is terrible for about 3 days then gradually goes. It is so bad that I can barely get off the couch or move without being hunched over. I suspect that it is back. My drs advice was to go back on Lupron. I do not see that as an option, since the severe mood swings almost cost my marriage. My husband and I want to try to get pregnant in two months. What can I do? Get a second opinion? I am trying herbs and vitamins for about 2 months and I’m not sure if it is working. I feel very frusterated. Please help.

Dear MJ-
There are multiple ways to treat endometriosis…all with varying success rates. Your methods have obviously not been too successful…
We use a laser and perform open surgery with our FAS to exam ALL areas of the pelvis.
You are correct…endo is not visible by ultrasound.
Possibly your Dr. was looking for signs of adenomyosis, which is uterine endo, and often presents with an enlarged uterus.

Hi, My name is Felicia Townsend and I’m 28 years old and In 2002 I had a subtotal hysterectomy due to a potential possibility of endometriosis.Any I was reading some information on the things he should have did and it was never did.And after getting this done I had an infections, I had to have a blood tranfusion and also a blood clot in my right lung all in the same month. After all that took place I went to a new doctor a she complete the hysterectomy in April of 2003. And I’m having alot of problems now that I have a full hysterectomy what are some of the things I can do to ease the problems with sex, depression and feeling like I’m not worth nothing because I have nothing inside.

Dear Felicia-
Thank you for posting this email…you may end up helping a lot of women as a result.
I wish we could give you some positive input….up to 70% of women can experience symptoms like this once the uterus is removed, and many gynecologists will not discuss these possible issues prior to surgery.
I would recommend having your hormones evaluated…sometimes changes can take place once the uterus is removed, even if the ovaries are saved.
Please realize..this is not something you are fabricating….this can be a REAL problem for many women after hysterectomy.

what is the difference between Adenomyosis and endometriosis.

Dear Steph-
Adenomyosis is a type of endometriosis…it is only found inside the uterine muscle, and does not migrate outside the organ into the surrounding pelvis. Endometriosis attacks other organs in the pelvis outside the uterus. Both spread with hormonal shifts during monthly cycles and should not go without treatment.