Ladies.. endometriosis?

[Rora]

My gynocologist is being of little assistance (it's time to switch.. ) and I think I've outsourced the internet.

Does anyone here have endometriosis? I've read all the symptoms, etc online but I would like to hear some personal symptoms/stories of people.

My mom, aunt, Grandma, and two cousins have all had endometriosis and I'm starting to wonder if I do too. Does anyone know if it's hereditary? Just looking for some information and some support since the infertility aspect scares me.

Please feel free to give me any info, websites, etc.

Thanks Ladies!

 

[JessicaR]

I found many doctors that believe there is a hereditary link. Lots of search-able info - weed out the garbage.

I had endometriosis many years ago prior to getting married and having children. I ended up having a laparoscopy and going on Synarel. Worked for me and becoming pregnant kept it gone for many years. It has recently returned along with adenomyosis.

My initial symptoms were pain, cramps and bloating.

http://www.infertilityphysician.com/endometriosis/heredity.html

There is also a genetic theory that is being studied worldwide by doctors based in London. This theory bases strong evidence on the idea that endometriosis is hereditary. Early studies show that women with a family history of endometriosis are more likely to have daughters who suffer from the disease.

http://www.americanpregnancy.org/womenshealth/endometriosis.html

Why won't your doctor listen?

 

[Rora]

Thank you Jessica R!!

I've been seeing my gyno since I was 17- he's just an old grouch and makes me feel really stupid when I ask him questions- talks slower, asks me if I understand (but not in the nice way..), and kind of just shrugs off my concerns about this because "I'm on the pill and that should fix things..".

Again, thanks for the encouraging words about pregnancy and the links!

 

[PRINCESS VIJA]

this might be TMI, so enter at your own risk!




I had terrible abdominal pains/cramping. They would get worse when it got closer to my period, and during that time, especially when I was close to having a bowel movement. They figure the endometriosis for me is wrapped around the colon... OUCH! They found it by doing the least invasive ways first, by process of elimination I was put on Birth control pills to help control it, and as soon as I was put on Birth control pills, it was GONE!

good luck! I hope you find the help you need.

 

[Rora]

I had terrible abdominal pains/cramping. They would get worse when it got closer to my period, and during that time, especially when I was close to having a bowel movement. They figure the endometriosis for me is wrapped around the colon... OUCH!.

I have this too, it's terrible right before a bowel movement.. Your situation sounds so scary!! Glad the BC fixed it!

 

[a1tinkfans]

GET a new gyn...one that CARES about you.

Have Endo...had a laparoscopy and found out that it had literally twisted my tubes and did a bit of damage...many years of infertility and ultimately did have a beautiful baby boy however it was not without many many procedures and ups/downs a long the way.

Symptoms were already mentioned: Severe severe cramping, bloating and pain.....after lap, was better a while but it does return unfortunately...

It is so important to have support of your physician.......pls look/ask around there are some that really DO care!
Best of Luck........

 

[zachnsamsmommy]

I have endometreosis...was diagnosed about 5 years ago by my RE when I was undergoing some infertility testing. Honestly, my RE didn't think I had it at the time (I had no symptoms), and basically I had exploratory surgery to 'rule it out'. Well...lo and behold, I had stage 2 endometreosis (I think there are 4 stages, 1 being the mildest, and 4 the worst).

I finally was about to get pg a little over 3 years ago, and everything seemed great for a while. Now that I am off the pill (we are ttc #3)...everything has changed.

I now have cramps so severe when I have my period, that I could cry. I have lots of pain, and (yes TMI)...bad diarrhea. Even 2 pamprin or Midol every 6 hrs doesn't help. My ob/gyn thinks my endo might be on my colon now, b/c of the diarrhea. It doesn't help that I had a c-sec, which can introduce more endo into the rest of my body.

We are going to ttc a little while longer before I go back to the doctor, but I have a feeling I need to have the surgery again.

 

[NewCrew42]

I have endo as well.

All the symptoms listed above severe cramping, heavy bleeding, diarrhea, nausea, vomiting, etc. Bleeding between periods while on the pill. Yuck!

First, find a doctor that cares about you. There is help out there. My first doctor was of NO help to me.

Also, getting on the right pill for you can make all of the difference in the world. Your BC pill can also be supplimented with another hormomal pill to help get your endo under control.

 

[clutter]

Thank you Jessica R!!

and kind of just shrugs off my concerns about this because "I'm on the pill and that should fix things..".

Even though you need a better doctor, he is kind of right. I was diagnosed with stage 3 endo almost 30 years ago. They've learned a lot since then, some of it from me! After the rest of the available hormone treatments, my doctor put me on the pill, without a break, for years. I think I went 9 years without a period. Then when I started taking the pill the regular way, it took less than a year for me to need percocet during my period. (not cramps, the other pain.) Back to the supression. I've had bad doctors, horrible doctors and some really really good ones. And I did have a baby, without IVF, much to everyone's surprise. On the downside (maybe) it seems that after all this time of being on the verge of needing a hysterectomy, my doctor seems to think I can get through menopause without one.

 

[2bearsmom]

My sister will be 33 next month. This spring she was finally diagnosed with endo and a femoral hernia. For YEARS she had been saying she had non-cyst pain, because nobody could find a cyst yet she was always in pain/painful periods, bloating etc. She had a colonoscopy done last year because they thought she IBS or something else similar. Finally she goes in for the femoral hernia repair and the endo was wrapped around her femoral artery. Her surgery took longer than expected because of this. She has made a full recovery but she was right, she had pain and knew it wasn't nothing. Her gyne wanted to put her on BCP, which she objected to and saw a nurse practioner that is more of a naturopath and got the results she wanted.

 

[apirateslifeforme]

I suspected for many years that I had endometriosis. I got my first period just before I turned 11 and they have always been horrible. The pain is so great that I literally cannot move for at least a day, more like 2 or 3 days total. At first, the doctors had me taking prescription anaprox that didn't do a darn thing. I now have to take 2 Tylenol Extra-Strength Rapid Release pills every 4 hours...the regular dosage apparently is 1 pill at a time, but I might as well be popping candy. And the bleeding is so heavy that I need to wear 2 "overnight"-sized pads - no tampons because of (sorry if this is TMI) the clots. I tried 6 different BC pills...nothing helped.

I was finally diagnosed when I was 26 and had major surgery to remove a melon-sized ovarian cyst. The doctor removed that and found 2 smaller cysts on my right side, as well as endometrial tissue "everywhere." The weird thing was, the pain had actually eased up as the years went on and the undiagnosed endometriosis got worse

Anyway, the pain has slowly been returning over the past 9 years and I now have a cyst on each ovary again (only 1 inch each, so the doctor isn't too concerned - yet). I am now 35 and have met my Mr. Right, and I only pray that I can still have children...just give us one son, that's all I ask

 

[hipporina]

I too have endometriosis. My main problem is killer cramps. They have bothered me since I was 15. I did have laproscopy to clean it out, but it didn't do any good. As for infertility, none of the doctors we went to thought that the endo was causing our infertility problems. They never found a reason, but they didn't think the endo was a problem. You just never know.

More importantly, find a new doctor! If he is not caring and compassionate, then he is not a good doctor.

 

[JessicaR]

You are very welcome. I don't know if any of these doctors are close to you but, they are Endo Specialists. Several doctors around the world have made endometriosis their primary focus. A consultation with one of them could lead you in the right direction. Also with a new recommendation to a great OB/GYN. I have had this site bookmarked for a while so double check that their info is current if you find one.

D. Ashley Hill, MD
Associate Director Department of Obstetrics and Gynecology
Florida Hospital Family Practice Residency
500 East Rollins Avenue
Suite 201
Orlando, Florida 32803
(407)897-1668

Michael D. Fox, M.D., Gyn, RE Urogynecology
North Florida Gynecologic Specialists
3627 University Blvd. South
Suite 615
Jacksonville, FL 32216
(904)388-4695

Dr. Sam Tarantino
Tampa
(813) 971-0008

Samuel Herring, MD
(561) 218-2722

Samuel Abramovitz, MD
Boca Raton, FL
(561) 477-7500

Leonard Ostreich, MD
Boca Raton, FL
(516) 338-5255

Mark Denker, MD
Palm Beach Fertility Center
Boca Raton, FL
(561) 477-7728

Mick Abaé, MD
Director, The Center for Advanced Reproductive Endocrinology
6738 West Sunrise Blvd
Suite 106
Plantation, FL 33313
(954) 584-2273

Steven H. Lewis, MD
Director, Florida Women's Center and Anatomic Pathology Services
Palm Bay and Vero Beach, Fla
(561) 567-7088

Drs. Ronald Ackerman & Steven Pliskow
603 Village Blvd., # 201
West Palm Beach, FL 33409
ph. 561-478-3177

 

[left210]

I have stage 4 endometriosis. I had a laparoscopy after many years of infertility and it worked and I had my first son in 2000. We tried for many years for another child (children are 7 1/2 years apart) and I had two more laps then doctors were telling me I just needed to either try IVF or have a hysterectomy. I was not ready to do either. We had essentially given up on having another child but my endo was still really bad so I did some research and found the Center for Endometriosis Care in Atlanta, GA. I sent them my records and they said they could help me. I traveled from Southern Indiana to Atlanta and it was the best decision ever. I was in surgery for 6 hours with two doctors working on me and a bowel surgeon on call as it was on my bowel and they didnt know if I would need a bowel resection or not. They said I had endo everywhere and they didnt know how I was functioning every day without being on narcotics because of the pain. Medications really affect me differently so I couldnt take narcotics and took the edge off the pain as best as possible with ibuprofen but was still in lots of pain. Anyway, the surgery was a success and 3 months later I was pregnant without any fertility drugs or IVF. I still have adenomyosis which can only be cured by having my uterus removed but now I manage any remaining pain by getting the depo shot. The doctors at the Center for Endo have a different approach to their surgery and go much deeper to remove the endo. They do not just burn it off the top surface layer but actually take it all out so you do not have continuing problems. Everyone at the center was just wonderful. If you have any further questions, please let me know.

 

[Denine]

I too have endo. Horrible pains, in bed for a week at time of period. No pain med would work and they wouldn't give me anything other than NSAIDs. I did have a lap which gave me the diagnosis. I have been on continuious BC for several years and what a difference. My life does not revolve around the time of the month!

I did not have fertility issues, my tubes were clean, but we still had infertility on DH's side.

I am 41 now and my worst fear is my GYN taking me off BC.

 

[Dr.Girlfriend]

You are very welcome. I don't know if any of these doctors are close to you but, they are Endo Specialists. Several doctors around the world have made endometriosis their primary focus. A consultation with one of them could lead you in the right direction. Also with a new recommendation to a great OB/GYN. I have had this site bookmarked for a while so double check that their info is current if you find one.

D. Ashley Hill, MD
Associate Director Department of Obstetrics and Gynecology
Florida Hospital Family Practice Residency
500 East Rollins Avenue
Suite 201
Orlando, Florida 32803
(407)897-1668

This is my doctor! I LOVE Dr. Hill. He is fantastic!

I have stage 4 endo. I went in with Dr. Hill 2 years ago because I was having trouble getting pregnant and I ended up having a very extensive lap. surgery done. On top of the endo everywhere (oh, those are fun pictures to look at) I had polyps, cysts, fibroids and a collapsed ovary that had fused itself to the back of my uterus.

If you're in the Orlando area I HIGHLY recommend seeing Dr. Hill.

My sister also has stage 4 endo and had surgery to remove it in Gainseville, but she is still having a lot of troubles with it.

 

[Rora]

Thank you to everyone who responded. I really need to get a new doctor- Jessica R, thank you for that list!! 2 of those doctors are very close to my hometown and Dr. Girlfriend's doctor is about 1 1/2 away from me (I live in Gainesville).

Again, thank you everyone. I guess I need a second opinion from a different gyno. I'm glad to hear the BC helps most of you- maybe I need to switch? I'm on Loestrin 24 Fe right now (very low dose of hormones).

Of course I need to ask my gyno what would work best for me but what BC are you ladies on that's working for endo?

 

[Dr.Girlfriend]

Thank you to everyone who responded. I really need to get a new doctor- Jessica R, thank you for that list!! 2 of those doctors are very close to my hometown and Dr. Girlfriend's doctor is about 1 1/2 away from me (I live in Gainesville).

Again, thank you everyone. I guess I need a second opinion from a different gyno. I'm glad to hear the BC helps most of you- maybe I need to switch? I'm on Loestrin 24 Fe right now (very low dose of hormones).

Of course I need to ask my gyno what would work best for me but what BC are you ladies on that's working for endo?

I was on Yaz after I had my 6 week post partum appointment last year. I just stopped it about a month ago because it was making my cycles wonky and causing other issues. I'm scared to see what a regular period is going to be like again, to be honest...but I hate paying $30 a month for b.c.

And yes, I think it's time for a new doc Yours sounds like he doesn't want to listen.

 

[RitaE]

Your post kind of reminds me of my Gynecologist's office. She has all these old fashioned advertisements and posters around from the good ol' days when womanly complaints were treated as "female hysteria" and "mental illness."

Quite hilarious to look at, unless you actually have a Doctor who apparently still subscribes to those theories.

Go find a new Doc Rora. Really, nobody needs to live like that.