How did you find out you had endometriosis?? - Page 2

XxRaeRaeXx · 06-26-2009, 02:14 AM

Thanks for the replies

. I am still waiting for my doctor to acknowledge my pain. He wants me to start BC (nuvaring) and see if my pain goes away. Not trying to be a downer but i have had this pain since i was 13 waaayyy before my periods stopped comming

. As long as i get the pain to go away , just need to figure out how!! lol. Ever since my last visit with my old gyne my bladder is very tender to the touch. And i randomly get times where i pee every 10 mins then the next day its gone. Sounds weird but possible correlation to anything?!?!

Rachel

em1080 · 06-26-2009, 11:56 AM

RaeRae...the frequent tinkling

...I have that. My last lap showed endo going along the tube (whatever its called) where the pee goes to get out. You can also have endo on your bladder. I have frequent tinkling, or a really hard time holding it...once I gotta go, I gotta go! too painful to hold it.

XxRaeRaeXx · 08-22-2009, 03:13 AM

Quote:

Originally Posted by em1080

RaeRae...the frequent tinkling

...I have that. My last lap showed endo going along the tube (whatever its called) where the pee goes to get out. You can also have endo on your bladder. I have frequent tinkling, or a really hard time holding it...once I gotta go, I gotta go! too painful to hold it.

I didnt know of all the places you could have endo. I thought it was mainly your ovaries. but I hear ya!! Ill be fine then all of a sudden i need to use the bathroom, once that feeling comes its like i have to go NOW!! sometimes i even have to run to the bathroom

. It weird how sudden it can come though.

Rachel

Stacie M · 08-23-2009, 01:58 PM

Quote:

Originally Posted by XxRaeRaeXx

I didnt know of all the places you could have endo. I thought it was mainly your ovaries. but I hear ya!! Ill be fine then all of a sudden i need to use the bathroom, once that feeling comes its like i have to go NOW!! sometimes i even have to run to the bathroom

. It weird how sudden it can come though.

Rachel

You can pretty much have endo anywhere. I have even heard of it in people's lungs. The definition of endometriosis is actually endometrial tissue (the tissue from inside the uterus) being outside the womb. Where it ends up can be anywhere!

Rosie1028 · 08-24-2009, 01:44 AM

I have been wondering if I have endo. My insides just ache and hurt alot. I am on Yaz and I take it 3 months non stop ( no inactive pill) I have also been having urinary issues. When I have to go, I have to go NOW! Sometimes I notice that I am dribbling a little. How flippin sad is that!! I am due for a pap and I am going to ask my gyn about it all.

XxRaeRaeXx · 08-30-2009, 04:16 PM

Quote:

Originally Posted by Rosie1028

I have been wondering if I have endo. My insides just ache and hurt alot. I am on Yaz and I take it 3 months non stop ( no inactive pill) I have also been having urinary issues. When I have to go, I have to go NOW! Sometimes I notice that I am dribbling a little. How flippin sad is that!! I am due for a pap and I am going to ask my gyn about it all.

My insides ache and hurt alot as well

, pretty fraustrating thing to deal with daily. You should def. ask your gyno it doesnt hurt to ask. I go sept. 8 back to my gyno and i am bringing up the possibility of endo again, because i just got done with my third period this month!! I hope everyone is doing well.

Rachel

megapixel · 10-24-2009, 02:55 PM

At age 16 via laparoscopy, my gynocologist discovered that I had endometriosis after a visit to the ER for a sharp pain in my lower right abdomen. I had powder burn endometriosis, some of the most pain. In the pictures from the operation, it looks like someone had put out a cigarette on my ovaries.

Samie · 10-24-2009, 07:43 PM

I personally had idiot doctors for along time, and an idiot father who just thought I was "faking" all the pain I was in. So I learned to live with it. I WISH I had pushed the issue further much sooner. I didn't actually push any issue, it was my current Ob/gyn, who I've been seeing for a year and a half now, and have known for 5 yrs. After finding a polyp in my uterus, and a 5cm cyst on my left ovary, I casually mentioned, Oh, so that's what's causing my middle cycle pain. After asking me further questions about how often I'm in pain, and just how severe it is. He scheduled a diag. lap for asap. I'm sorry I didn't push the issue sooner, because it might have saved my left fallopian tube. Between the cyst and endo, it was totally destroyed and had to have 1/2 of it removed.
My doctor put it to me this way, " You 100% should NOT be in this much pain, for this long Sam, its not a good quality of life, and If I can do something to minimize it, then I'm going to, because its NOT normal." I'm thankful everyday he believes that way.

XxRaeRaeXx · 10-26-2009, 12:34 AM

Wow Samie thats awesome that you found a doctor who cared enough to listen and help you find out why you were in pain.

My doc is great, i am just unsure if he understands me. The problem is, the first appointment I had with him he had a trainee come in and ask me all the questions and i dont know why she made me feel very uncomfortable and every time i would say something she would kinda look at me like YA RIGHT!! I guess thats why I dont think my doc understands to the full extent that i got HORRIBLE PAIN. when i was 13 my pediatrician (SP) put me on vicodin every month for my period geeze. That lasted til about 2 years ago.

After comming off the nuvaring 2 months ago my periods have actually been awesome, except for the fact that I have had 5 lol going from 0-5 what the hell is going on here lol. But mild cramps (for me, still hurt pretty good) which is extremely unusual.

Okay sorry for the rambles, I do have a question for all you ladies who have experienced Endo, my Doc wants me to do the Lupron shot for 3 months to reset my cycles and see if my pain goes away. My doc doesnt think i have endo (even though i keep telling him all my symptoms) Is there anyway to figure out if I do have endo from going through the series of shots??

TIA!!

Rachel.

kawichix · 10-26-2009, 09:31 AM

I am convinced I have endo. I was diagnosed with PCOS this month. My doctor is hesitant to test for Endo because she says I have the classic signs of PCOS, except for being overweight. I get pains all month long, sometimes they are just pinchy, sometimes its cramps and sometimes its like someone is jabbing a knife in there. I am bloated all the time. I get PMS for a whole week before my period comes... and sometimes it never comes. Ive had depression for 14 years which has only gotten more severe in the past couple of years. Anxiety is also an issue and I have struggles with eating disorders. I am starting a birth control this month and hopefully it will relieve my symptoms. My doc wants to "see how it goes" before we test for Endo. I am very scared of whats going to happen in the future... I am only 24 but I am so worried about not being able to have kids. I am having a hard time accepting all of this.

froubaby · 10-26-2009, 12:51 PM

I had lap surgery done in January to confirm after some research last September after having another cyst erupt. I had started doing some research online and that is the first I had ever heard of Endo, but I'm pretty sure I've had it since I was a teen (now 30). I wish I had a mother that questioned things a little more back then.

Samie · 10-26-2009, 03:16 PM

Rachel~ I think the Lupron shots are supposed to put you through a "fake" menopause...they think if they do this, and the pain goes away, its endo, if the pain doesn't go away, then its something else. At least that's what I comprehended when reading up on endo and its treatments.
For ME personally,

I would be extremely hesistant to doing Lupron and going through a false menopause. I personally would opt for the diag. lap. But its sounds like your doctor isn't even giving you that option now. I noticed you also have IBS. I personally don't, but I have noticed ALOT of women who have PCOS and Endo do as well.
If you think it would help, what I would recommend doing is charting your pain, and where its located on a calendar. If after a couple of cycles you see a pattern, take that to your dr. and say "Look! here, why does this happen during x,y,z days..." That's the thing about endo is that the pain isn't neccessarily there everyday, and at least mine was very cyclicly based. I got about maybe 2 weeks of minimal pain a cycle before surgery.
Also if your doctor isn't up to snuff on endo, you may want to find one who truly is. Same with PCOS.
I will say the ONLY time I didn't have any aches and pains, was either when I was pregnant or exclusively breastfeeding my two children. I breastfed them for 3yrs, and 2.5yrs. Didn't start getting AF until they were both 1yrs each. So during that 21month period, for each, I did NOT have any of the pains that I now contribute to my endo.

froubaby · 10-26-2009, 07:01 PM

Quote:

Originally Posted by Samie

I personally don't, but I have noticed ALOT of women who have PCOS and Endo do as well.
If you think it would help, what I would recommend doing is charting your pain, and where its located on a calendar. If after a couple of cycles you see a pattern, take that to your dr. and say "Look! here, why does this happen during x,y,z days..."

I am one of these people you mention that has PCOS and Endo.

As for charting, I too recommend doing that and taking to your doctor. Don't be surprised though if your doctor doesn't read through it. I had shown it to the 4 doctors I have seen in the past year and only one of them took the time to read it, but even then he just shrugged me off with a "you probably don't have Endo".

I do the charting though anytime I start having new pains (female related or not) and always bring it to my doctor. I had done this when I started getting headaches to give to the neurologist. The first doc didn't read it at all, the 2nd opinion doc did skim through and I've been with the 2nd opinion doc since.

It's hit or miss for doctors to actually take the time to read through what you've written so don't be discouraged if you take the time to chart and then find they don't read it. Keep on charting for your own records because over time you never know when you'll be asked a question and will be able to refer back to your charting to easily answer. Plus, if later down the road you need a surgery approval from your insurance and they decline, you have your charts that could easily be sent in to argue the need for surgery.

jerseygirl79 · 11-02-2009, 12:44 PM

Hi! I'm new to the site but I think it's wonderful. I had a laperoscopy/ hysteroscopy done when i was 20 (10 yrs ago). They basically went in thru my belly button and also made a small incision to the right of my belly. They found that my endometrium was a bit thick, so they scraped it down. They also lasered away few blood clots. I was knocked out for the whole procedure, so it wasn't painful. Afterwards you're a little sore in the lower abdomen, as if you did too many crunches. You're also a bit bloated bc they fill your abdomen area with air to take a good look at the ovaries, tubes, and everything else. They usually take photos too (crazy to look at!). I had mine done in NY, I remember the doctor was Dr. Husami. The reason I went was bc I had been suffering for years with severe pain for about a week before my period, and a few days after (and all throughout). I would vomit from it and passed out 2x from it. Feet & hands would be cold and sweaty, lower back cramps, feet cramps. I could also time the surge of pain as if it were contractions. Usually felt like it was my right ovary. I've never felt anything on my left ovary. After that he put me on a BCP. my periods did get better, but i had to stop the BCP after a few years bc I noticed lots of hair loss and I started getting leg cramps on my calves so I was worried about blood clots. It's a great procedure to do in order to get an answer. THere's really no other way to determine the endometriosis for sure without looking inside. I think I should probably get one done again soon since my symptoms have been worsening. Good luck!!

MissSJamaica · 11-04-2009, 01:09 PM

Hello my Soulcysters sisters,
I was diagnosed with pcos at age 18, and last month my new ob/gyn told me I may have endo, well my question is..Is there any way to diagnose without a laparoscopy?
For the last few months I feel some discomfort when I pee and I mostly feel pain in my right ovary and a little in my left. The right one gives me more trouble I know this is the pcos. But when I told my doc I feel alot of pain in my reproductive system when i'm having my menstrual cycle while i'm on a bc, he said this shouldn't happen.

What are some other symptoms that I can know whether or not I have endo?