Possible Endo in addition to PCOS?

closer2mod · 09-06-2008, 11:26 PM

I saw my normal family health care doctor this past Thursday for a non-stop heavy bleed. I had to go to the ER last Sat. because I was bleeding really heavily and almost doubled over in pain. TMI but I was going threw a super plus tampon in about 45mins and had major clotting. The ER doctor told me it was normal. I stood it out till Thursday when I had been bleeding for over 10 days on Yaz. She then put me on Loestrin which has helpt ALOT my bleeding has been reduced drastically. Most of the day Ill just spot but sometimes during the day Ill get some pelvic pressure and then it will bleed a bit, but its not bad at all. My doctor also made me an appointment for a OBGYN and scheduled me for a Pelvic ultrasound, she mentioned that it sounds like I may have Endo.

I was just wondering if anyone else's symptoms are close to mine and if so what are some treatments that have worked for you.

OliviaLeigh · 09-07-2008, 11:35 AM

Hi,

I've had those "episodes" like you described for YEARS. I was told - it's normal, you just can't deal w/ pain, it's all in your head, blah blah. Then it was blamed on PCOS, which I believed for a while, so on BCP I was put. Then, it stopped working.

I first started just having severe pain during periods, then periods wouldn't stop, so the pain would not stop. Long story short in 6 mos I was in so much pain I was running a fever all the time, high blood pressure, high pulse rate - my body was in so much pain & bleeding non stop (on BCP as well!).

My ob/gyn did lap surgery and found endo. It's very sad it took me so long to get here, but I just kept thinking I was weak or couldn't put up with "normal pain."

Look at the Endometriosis Association website for reliable information too. If your dr suspects Endo, you cannot see Endo on an U/S - so if they just do that and say no Endo, find a new DR! Endo means that endo cells grow OUTSIDE the uterus, so how would an u/s tell you

If your dr does suspect Endo, you will probably have lap surgery. I would do it sooner than later my pain got so bad it hurt to urinate, have bowel movements, walking, bending over, intercourse, just everything.

If you have any questions, please feel free to ask. GL

By the way -- I don't mean to not have an ultrasound - do it, but if it comes back normal, talk to your dr about lap surgery. If the ultrasound has abnormalities - thick lining, etc then they'll go down that route next. It's a long road to discover endo, so keep your head up and be sure to ask questions. I hope you feel better! As for things that help - my dr has me take 600mg of ibuprofen every 6-8 hours & I love my heating pad!!!

closer2mod · 09-07-2008, 03:34 PM

Thank you for the reply

Fortunatly my pain is non existant currently. It really only happens once Im bleeding and its pressure, depending on how much Im bleeding how much pressure I have. Which from what Ive heard is a classic sign of Endo, Ive also been urinating more frequently which is another. I *know* I have Endo if that makes sense because I have all the classic symptoms. My PCOS also ran amuck for several years and Im sure thats what caused the Endo. Ive done so much reading its sad really.

Last week when I was really bleeding I had to take 1000mg of tylenol to be able to function, I do understand your pain. I just couldnt imagine it being constant, thats just horrible

OliviaLeigh · 09-07-2008, 04:19 PM

It's important to let you dr run the full test of everything - even if you *know* it's endo. The word endo never came out of my mouth w/ my dr b/c I wanted her to check everything which she did. She did a hysteroscopy as well as a laparoscopy and took multiple samples & biopsies. She also removed all the cysts on my ovaries to check. Luckily for me they all came back non-cancerous, but you can never be too careful in my book

Endometriosis has been classified by the AARDA (American Autoimmune Diseases Assoc., Inc.) as autoimmune. I also have other autoimmune problems and that is why I think I have endo. I don't know how much research has been done w/ PCOS & autoimmune or PCOS & Endo. I do think PCOS is a hormonal/endocrine problem and Endo I think can be associated w/ inflammatory/autoimmune issues. In my personal opinion I'm curious if women w/ Endo test positive for ANA or have Rh factor.

My dr recommends ibuprofen/motrin. EA (Endometriosis Association) also cites NSAID's as a great help for endometriosis. I only have good luck w/ Tylenol to help my arthritis. You have to be careful with NSAID's though - you cannot take them a week before surgery. You may want to call a dr to get Rx pain killers (I personally like percocet). NSAID's can also cause stomach bleeding and ulcers, so if I start to take too many, I ask for a Rx pain killer. If your dr is familiar w/ the pain of endo she/he will not have a problem w/ Rx pain killers being prescribed for you.

One important thing w/ endo is that it reacts to hormones. I now eat only organic meat (animals not stimulated w/ hormones), organic milk (cows not given extra hormones to produce more milk), organic eggs....the list goes on. I've felt better since doing this and I'm not bleeding through BCP's anymore

I think all those extra hormones cause me problems - highly sensitive I guess!

Not to scare you, but my pain started when I was bleeding and then got progressively worse. I was also not on BCP's when the pain was worsening as I was TTC *sigh* but that is a totally different post! LOL

If you like reading, I def suggest the Endometriosis Association's 2nd Edition of "Endometriosis" - I read it in one day. It really goes over all the symptoms, possible causes, treatments, etc. You def will learn a lot and not feel alone.

Hopefully my ramble is not too much. I just don't want anyone to end up like me again - ignored until I was TTC, stuck on BCP, emergency surgery......it's just not right. Please keep me updated!

closer2mod · 09-07-2008, 07:18 PM

Thank you very much

It helps alot IMO that somebody has been there and undersands. Im going to let them run whatever tests that they want, and hopefully get a diagnosis. My regular doctor has been very supportive despite the fact Ive only started seeing her. My old doctor dianosed me with PCOS and wasnt interested in controlling my symptoms, put me on a low dose Met. and told me I was fat. But asside from that she took my BP and put me on BP pills after it only being high that day and wanted me to come back daily to get it checked. I have white coat syndrome, and being told you have a syndrome like PCOS and etc is enough to make anyones run a bit high.

Anyway my new doc highly recomended this OBGYN so Ill give him a shot. Ive never saw an OB before so its kind of a whole new ballpark.

OliviaLeigh · 09-07-2008, 11:02 PM

Good

I hope you like your GYN, let me know how the appt goes. If they schedule a lap let me know and I'll give you some insight (the good and bad!).

closer2mod · 09-09-2008, 03:51 PM

Thanks

I went and had my pelvic ultrasound done today, theyre sending the results to my regular doctor within the next few days. So I hope she can tell me something before I got to the gyno.

happyday · 09-09-2008, 11:57 PM

Hi... I've had stage IV endo for nearly 10 years. I endured the painful periods with excessive bleeding and clotting before being put on continual bcp. The continual bcp helps -- one reason is because you don't have a cycle -- unless you're TTC... then that's not going to help!

Between surgeries I actually had ultrasounds periodically to check for endo growth... the ultrasound is used for more than looking in the uterus. The ultrasound is able to check the size of the ovaries and determine if they are larger than normal or if there are other masses attached to the ovaries. However, the ultrasound can't tell you if there are adhesions which is when the endo acts like taffy and starts attaching to your organs, etc. With stage IV endo everything pretty much gets stuck together and moves as one large mass.

Ibuprofen can help but in time you have to find some other methods for relief because the ibuprofen can eat away at your stomach lining -- I've had an ulcer as a result.

The only true way to diagnose endo is with a lap... and many times the doctor can excise the endometriosis while performing the laparoscopy.

Good luck!

Heather

closer2mod · 09-14-2008, 07:11 AM

Thanks for your insight happyday, Im sorry that your dealing with stage 4 endo from all ive read thats a rough road. I wish you the best

I called my normal doctor about my Pelvic Ultrasound results, and everything checked out as normal. I was floored...im sure im the only person that has ever said "well thats weird" to a good test result. LOL Just not what I had prepared myself for. I know that milder forms of Endo wont show up on a PU, so Im still going to see a Gyno...i had re-scheduled for the 17th but my hectic school/work schedule has taken a toll again and Im going to have to re-schedule again.

I know its possible to also have PCOS without cysts which I apparently dont have, as I have every classic symptom of PCOS. But I suppose my former doctor(the one that diagnosed me last year) didnt do a correct diagnosis as it was pretty much a well...your pap is normal and you have all the symptoms heres some Metformin...thanks. Makes my condition more baffeling all the time. Im happy that what tests Ive had so far are normal...but it just makes it all harder to understand.

I have scalp hair thinning, altho not severe...increased facial and body hair, darkening of skin folds, weight gain expecially in the mid section and of course the abnormal bleeding and etc. Is it possible that just some really screwed up hormones are to blame?

happyday · 09-14-2008, 10:19 AM

closer,

Amidst trying to live your life the journey to a diagnosis and subsequent treatment can be a hard one -- especially if you're juggling work, school, etc

Remember that pcos is a syndrome which means that it's a combination of symptoms that lead to the diagnosis rather than a single test that indicates a disease. The combination of symptoms you describe are typical of PCOS. You might want to consider finding another doctor - an reproductive endocrinologist, an endocrinologist, or just another ob/gyn.

As for endometriosis - a good gynecologist with endometriosis experience will recognize that the ultrasound doesn't tell the whole story and will order a laparoscopy to diagnose and treat.

closer2mod · 09-14-2008, 07:02 PM

Thank you

I did find another regular doctor she seems to have alot of experience with PCOS and Endo because she suggested that I see a OBGYN and specifically be tested for Endo. She has been a great comfort these last few weeks with dealing with my flare up of symptoms. She also made a referal for me to a OBGYN that is supposidly really good and has treated PCOS and Endo in the past. I just havent as of yet had the time to go see him. Im going to request some hormone tests as well as a Lap eventually, as Id just like to *know* whats wrong with me. This forum has also been a great source of comfort, it just helps to know that others are going threw the same thing, and hearing about others symptoms gives hope to a diagnosis of ones own problem