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Anyone else have endometriosis?

lesleyw Posted:

Anyone else have endometriosis?

If so, are you concerned about TTC? I have been thinking about this a lot lately. I know DH wants to wait to TTC, but my doctor (who is also a personal friend) told me she thinks we shouldn't wait for more than a year to start TTC. I had laproscopic surgery 4 years ago (the doctor told me the diagnosis was 'mild' endometriosis, even though I was in a lot of pain, which meant it wasn't too widespread or severe) and in the past years my symptoms have been mild to moderate, but I'm concerned as I'm getting older that waiting my not be such a good idea... Just wondering if anyone had any experience with this.

btrflygrl Posted:

Re: Anyone else have endometriosis?

my best friend has it and is about to pop out #2!!! I'll try to answer your questions as best I can....they were trying for a good 3 or 4 years before having #1

lesleyw Posted:

Re: Anyone else have endometriosis?

Trying for 3 to 4 years! Yikes! I think I'm officially chucking my BC pills! Just kidding, but was it endo that caused the problem? Were they under 30? Thanks!

Betty Posted:

Re: Anyone else have endometriosis?

My sister has it. She has had 3 surgeries for it. She is on BC (a few pills a day) and constantly, there are no period breaks. SHe is nervous about being able to get pregnant when she is ready. She is 30 now and still single. I would really love for her to find someone special and be able to start TTC so it won't be so difficult for her
AliKing Posted:

Re: Anyone else have endometriosis?

I was told that I had a mild case of endometriosis. I am not really sure what the symptoms are, but I had been on birth control it seems like forever. I have a lot of concerns about TTC, and have an apointment with Gyno in June to discuss all of that. It worries me a lot, and I dont really know much about it. I just know that it can lead to sterility which is my biggest concern.
I just went off BC this week, and nothing really has changed.. I dont feel any pain or cramping...
lesleyw Posted:

Re: Anyone else have endometriosis?

I found an endometriosis chat board on www.tcoyf.com, which deals specifically with endometriosis and TTC. I think it is so hard because you just don't know if you will have problems -- it may be easy or you may find that it takes much longer because of the endo.

Betty Posted:

Re: Anyone else have endometriosis?

The worst part is you don't know how bad you have it OR if you even have it at all until they go in for surgery. They can listen to your symptoms and assume that you have it based on those symptoms but when they go in, that's when they see for sure.

I will have to tell my sister about the website, thanks
AliKing Posted:

Re: Anyone else have endometriosis?


Posted by lesleyw

I found an endometriosis chat board on www.tcoyf.com, which deals specifically with endometriosis and TTC. I think it is so hard because you just don't know if you will have problems -- it may be easy or you may find that it takes much longer because of the endo.



Thanks I am going to check this out. I am nervous because I felt like my dr was so vague about it... 'Slight Endom' its like what does that mean??
lesleyw Posted:

Re: Anyone else have endometriosis?


'Slight Endom' its like what does that mean??


I think that is what they call minimal or stage 1 endometriosis. Have you had laproscopic surgery? I think it has to do with the number and severity of the lesions. Here is some info I found on www.tyocf.com about endometriosis and its stages.


STAGES OF ENDO:

There is a chart with descriptions at this link endo stages but i cannot get it to display in the post.

I did find this in an article on the webmd site: The Stages of Endometriosis

Endometriosis can vary in terms of severity. Like other diseases, it is categorized into four stages -- the higher the number, the more severe the endometriosis.

Stage I is when your endometriosis is minimal and still very thin and 'filmy,' hence easier to treat.

Stage II is mild endometriosis; the endometriosis is still on the thin side but is situated more deeply into your surrounding tissues.

Stage III is moderate endometriosis; here, your endometriosis is denser mixed with some Stage I or Stage II symptoms.

Stage IV means severe endometriosis. In this case, the endometriosis is dense and deep, a bad combination.


AND SOME MORE INFO...

Endometriosis 101
What are 'Stages?'
Your surgeon determines the extent and severity of your disease once confirmation of diagnosis is made through both sight of the lesions as well as biopsy results (7). Staging has been defined by the American Society for Reproductive Medicine (formerly the American Fertility Society), with criteria based on the location of the disease, amount, depth and size. These factors are all graded on a point system and classification is thus determined. The first classification scheme was developed in 1973, but since then it has been revised and refined 3 times for a more precise method of documentation. As of 1985, the stages are classified as 1 though 4; minimal, mild, moderate, and severe. Stage of the disease is not indicative of level of pain, infertility or symptoms. A woman in Stage 4 can be asymptomatic, while a Stage 1 patient might be in debilitating pain.


Treatment for Endometriosisthis is info from the Georgia Reproductive Specialist....

Therapy for Mild Endometriosis (Stages I and II)
Treatments for mild forms of the disease are controversial. Some physicians feel that since adhesions may not form at this stage,it's better to take a wait-and-see approach (expectant therapy)rather than prescribing heavy doses of medication. Although most studies have found no proven benefit of surgical treatment for minimal endometriosis, more recent studies suggest increased pregnancy rates after completely excising all endometriosis. Therefore, as endometriosis progresses in up to 60% of women if untreated, aggressive surgical management at the time of discovery leads to the long term best results.

After excising all endometrial implants with the laparoscope, up to 75 percent of these women will become pregnant within twelve to eighteen months without additional medication. If no pregnancy occurs within six, the patient is older than 35 years of age or, has been attempting pregnancy for over two years, superovulation and intrauterine insemination is often successful.

For those with extensive inflammatory endometriosis, I recommend a short course of GnRH agonist followed immediately by more agressive therapy. However, for most patients with minimal or mild disease who have undergone complete surgical excision, the use of GnRH agonists or danocrine are not likely to improve pregnancy rates or prevent recurrences.

Therapy for Moderate and Severe Endometriosis (Stages III and IV)

Stages III and IV endometriosis, however, often cause thicker and broader-based adhesions than early endometriosis and often cause the ovary to stick to the pelvic sidewall. Frequently the wall of the large bowel or rectum are involved and a portion of the bowel will also need to be removed. Since the removal of these types of adhesions and endometriosis of the bowel and rectum require more care than removing the filmy ones associated with earlier stages of the disease, this type of surgery is best performed by a well skilled endometriosis team.

Prior to planning your surgery, I will have you consult with a bowel surgeon who may recommend a barium enema (x-ray) or an office procedure where the rectum and sigmoid colon are visualized with a flexible telescope. I will often recommend a GnRH agonist (Lupron, Synarel, Zoladex) prior to surgery to decrease inflammation. To safely perform bowel surgery it is necessary to perform a bowel prep a day or two before surgery (enemas, antibiotics and magnesium citrate or Golytely). But as I can never be sure when endometriosis of the bowel or rectum will be encountered and bowel surgery will become necessary, I order the bowel prep on all laparoscopy patients.

btrflygrl Posted:

Re: Anyone else have endometriosis?


Posted by lesleyw

Trying for 3 to 4 years! Yikes! I think I'm officially chucking my BC pills! Just kidding, but was it endo that caused the problem? Were they under 30? Thanks!



Yes...she was under 30 when diagnosed (heck, under 25) and it was the endo that was the problem...it was attached to everything...she was on prescription pain meds just for the painful cramps every month!!!
suzieq Posted:

Re: Anyone else have endometriosis?


Posted by lesleyw

If so, are you concerned about TTC? I have been thinking about this a lot lately. I know DH wants to wait to TTC, but my doctor (who is also a personal friend) told me she thinks we shouldn't wait for more than a year to start TTC. I had laproscopic surgery 4 years ago (the doctor told me the diagnosis was 'mild' endometriosis, even though I was in a lot of pain, which meant it wasn't too widespread or severe) and in the past years my symptoms have been mild to moderate, but I'm concerned as I'm getting older that waiting my not be such a good idea... Just wondering if anyone had any experience with this.



My Cousin had Endo 4 times, it was stage 3 to 4 each time. She had 4 laproscopic surgerys. As of right now she is prego with her 3rd child! The doctor told her that she might never be able to have a baby, as far as I know she was not even ttc.
lesleyw Posted:

Re: Anyone else have endometriosis?

Suzieq, thank you for posting such a positive story about your cousin. It is comforting to hear that.

Betty Posted:

Re: Anyone else have endometriosis?

Thak you for posting these stories. I always get so upset when I think that my sister may not be able to have children, she really wants them. I pray she is as lucky as your stories

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