Hey everyone, I am just very curious at how you found out you had endo..was it your symptoms, Dr. dx or anything you can think of. I myself am curious if i may have endo because many of the symptoms fit me. Please any repsonses would be great. Thanks.
Rachel
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Dx: Jan. 2009
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I will be having a laparoscopy done later this summer to confirm my diagnosis of endometriosis. I have never had any of the hallmark symptoms of endo, which would probably explain why it's never been an issue for me until now. I was also on the pill for about 10 years, so any symptoms I might have had would have been suppressed I guess?
After four cycles of clomid I developed two large cysts (one on each ovary), which at first my RE thought were just physiological cysts. That was back in February. After many weeks they weren't going away, so I was referred on to a new specialist to investigate further. My new RE is fairly certain that they are endometriomas, hence the laparoscopy to investigate further and remove the large cysts and anything else they discover. I am curious to find out if there is any other evidence of endo ~ and happy that when they are in there they will be checking out the status of my tubes and uterus to see if there are any other issues before we move back to fertility treatments. We'll see what happens.
I am curious to hear what everyone else has to say as far as symptoms and how they got their diagnosis. This whole endo thing is all pretty new to me!
Jane
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Started TTC in Sep/07, with low GI diet and acupuncture.
4 cycles of Clomid Oct/08-Jan/09; all BFN.
Break from TTC from Feb/09-Jul/09 due to endometriomas on both ovaries. Laparoscopy on 06/30.
09/24 - +ve HPT!!
09/25 - Beta #1 = 136
09/28 - Beta #2 = 535
10/01 - Beta #3 = 2196
10/22 - U/S #1 = H/R 166bpm, 1.54cm
11/18 - U/S #2 = 6.2cm To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
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My gynae told me it was a possibility 4 years ago but didn't follow it up. Gradually my symptoms got worse and worse (in my opinion, endo symptoms were worse than PCOS symptoms, yet the docs said only PCOS!). Last year I was getting more and more pain, constantly, plus uterine cramping on a daily basis. A constant feeling of period pain, nausea, lower back and leg pain, fatigue and really sharp ovary pains got worse over the years and finally was referred for a laparoscopy and diathermy which confirmed I have endo (and removed what they could see from my ovaries, tubes and womb, though I think I have it elsewhere still!!)...
I was always sure I didn't have it thanks to bad advise form doctors saying you have to have bleeding problems and too-frequent periods etc...not necessarily!! xx
i had all the symptoms for years and years. But no gynae ever listened to me. grr. Then last summer i finally get my gp and practice nurse to agree they thought it was endo. Then i finally got a lap done by my gyane this April.
eva
Thanks girls for the replies.. That is very intresting, and im sorry about your guys struggles with stupid doctors and painful symptoms .
Rachel
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Dx: Jan. 2009
Meds: Taken off Met!!Doc. wants to see my levels off to make sure I even need it(WooHOO).Put on Spironolactone.Taken off NuvaRing until ready to TTC.
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Other Dx: Hashimoto's Disease and possible IBS/IC/ENDO.
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I think for me, what was the most frustrating about it was that for so many years I was complaining of the terrible pain and doctors just shrugged and said it would go, or I was having "a bad cycle" - FOR YEARS?! EVERY MONTH?!
My GP often said "pain isn't a symptom of PCOS (WHATEVER!!!!) and endometriosis only cause painful periods"...right...
I actually had one doc tell me that I couldn't have both PCOS and Endometriosis...
I actually now believe that I have been through more endo symptoms than PCOS, and that now my PCOS is nearly gone/ under control enough.
My Ultrasound scans showed my ovaries to be clear whilst I was on the pill, but I think when I went on the mini pill, some cysts developed perhaps, but I had lots of endo on the back of my ovaries, tubes and uterus, so it's not surprising I was suffering. Also, ultrasounds don't often show endo, unless the growths are very large.
Wow.. that has to feel horrible.. I know exactly what you mean, I had been to almost 5 different doctors before the age of 18 to try and figure out why I was in SO SO much pain before and during periods, why they would last for weeks and show up every 3 weeks. Then finally they stopped comming and i was dx with PCOS. It was the weirdest thing going from having my period every 3 weeks for 10-12 (Heavy every day) To not having it at all. ALthough when i DO get my periods they are extremely debilatating .
Ashleystar: Good for you getting your pcos under control and i know how fraustrarting it can be when the doctors say, "Its just a bad cycle" OR "Your just a teenager you will grow out of it" BAH ARENT YOU A DOCTOR YOU SHOULD KNOW BETTER!! And how could they tell you that you cant have both endo and PCOS, come on do us patients seriously need to inform our doctors of information they should already know?!?!
Rachel
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Dx: Jan. 2009
Meds: Taken off Met!!Doc. wants to see my levels off to make sure I even need it(WooHOO).Put on Spironolactone.Taken off NuvaRing until ready to TTC.
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Other Dx: Hashimoto's Disease and possible IBS/IC/ENDO.
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I know, I would at times go in armed with info from this site and others to prove myself. Sad really. Then if I was being too "awkward" for them, they would perhaps refer me to a gynae...though that didn't happen until I was 19 after my entire teens being spent at the doctor's complaining of the same things and not knowing what to do! It is tragic that women are considered to be "moaning, grumpy, hormonal" etc when there is something wrong!!!
I feel for any girl or woman that goes through this stuff!
In a weird way, I was lucky to get endometriosis at a young age. If my parents hadn't demanded answers, there's no way I would have gotten the laprascopy at age 17 that confirmed my mom's suspicion of endometriosis. It was very mild at that time, but was upgraded to a Stage III last year. I'm scheduled for a complete hysterectomy on June 1: I can't wait! Ten years of this hell has been too long.
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My official diagnosis came at 26 after exploratory laparoscopy to check for endometriosis. However, my RE had said she thought I probably did (based on symptoms) have it a few years before. I had severe pain before and during AF and also bowel symptoms before and during AF. I also had bloating that could get pretty severe.
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My official diagnosis came at 26 after exploratory laparoscopy to check for endometriosis. However, my RE had said she thought I probably did (based on symptoms) have it a few years before. I had severe pain before and during AF and also bowel symptoms before and during AF. I also had bloating that could get pretty severe.
Are the laparoscopy surgeries painful?? I am just curious because I want to bring up some of my symptoms to my doc regarding Endo. But i am nervous if she feels i have enough she will want to peform the surgery. I hope all is well. And BTW congrats on your pregnancy when is your due date??
Rachel
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Dx: Jan. 2009
Meds: Taken off Met!!Doc. wants to see my levels off to make sure I even need it(WooHOO).Put on Spironolactone.Taken off NuvaRing until ready to TTC.
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Other Dx: Hashimoto's Disease and possible IBS/IC/ENDO.
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Are the laparoscopy surgeries painful?? I am just curious because I want to bring up some of my symptoms to my doc regarding Endo. But i am nervous if she feels i have enough she will want to peform the surgery. I hope all is well. And BTW congrats on your pregnancy when is your due date??
Rachel
Thanks, I am due 7/6 but will be delivering between 37-39 weeks (due to gestational diabetes and hypertension).
The surgery isn't bad. They made a cut in my belly button and two small holes in my abdomen. I was sore for several days, but not too bad. It is outpatient surgery, so I was home the same day. I think if you had it on a Thurs or Fri, by Monday you would be fine for work or school. My husband took a day off to help me in and out of bed because our bed sits really high, but other than that I was fine.
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Thanks, I am due 7/6 but will be delivering between 37-39 weeks (due to gestational diabetes and hypertension).
The surgery isn't bad. They made a cut in my belly button and two small holes in my abdomen. I was sore for several days, but not too bad. It is outpatient surgery, so I was home the same day. I think if you had it on a Thurs or Fri, by Monday you would be fine for work or school. My husband took a day off to help me in and out of bed because our bed sits really high, but other than that I was fine.
Aw your almost there!! Thats good to hear because I would not like to go through such a painful thing and them to tell me I didnt need it, But if i do need the surgery it will only help me in the long run if they find anything. I think that made sense lol. Good luck with your delivery .
Rachel
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Dx: Jan. 2009
Meds: Taken off Met!!Doc. wants to see my levels off to make sure I even need it(WooHOO).Put on Spironolactone.Taken off NuvaRing until ready to TTC.
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Other Dx: Hashimoto's Disease and possible IBS/IC/ENDO.
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Seems we all have trouble getting diagnosed! I had endo mentioned in passing after miscarriage. A year later, a different gyno did D&C (for the same miscarriage) and found endo. Also found PCOS but did not test me further, had go to ANOTHER gyno for that. Always fight for yourself if you know something is wrong!
Are laps painful? My first lap was easy, just sore and moving slow for the weekend. My 2nd, I was on the couch a lot longer, and my mom ended up staying with me during the day. After reading my surgical report, I'm not surprised....lots of scarring and widespread endo. Stage 3.
I am sad that my belly button is a different shape now and I get upset looking at my scars....small but reminders.
I have one spot, thats right above my appendix. I kept getting severe pain there whenever someone pressed on it. Once a year they tried to send me in for a CT scan (I ended upw ith about 3--then I said STOP)--but nothing showed. The last one I had they sent me to a hospital to have them check it. There they found a 9mm node (which when I had my lap, they found it to be Endo). Surprisingly, THEY DID NOT REMOVE IT...so I still get severe pain there--but I realise now its only certain times of the year, or because of PCOS, certain times during my cycles (if im getting a cycle). :/
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How did you find out you had endometriosis?? 
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and i know how fraustrarting it can be when the doctors say, "Its just a bad cycle" OR "Your just a teenager you will grow out of it" BAH ARENT YOU A DOCTOR YOU SHOULD KNOW BETTER!! And how could they tell you that you cant have both endo and PCOS, come on do us patients seriously need to inform our doctors of information they should already know?!?!
) and found endo. Also found PCOS but did not test me further, had go to ANOTHER gyno for that. Always fight for yourself if you know something is wrong! 
