Does this sound like Endo?

Brookie · 09-10-2008, 12:34 AM

Hello, ladies. I've been looking on this forum for some answers on endo. Any insight would be greatly appreciated. Sorry if this post is long.

Basically, I was Dx'ed with PCOS in 2004 or 2005. I haven't gotten a period since December, 2007. I just started seeing the GYN again recently because of no health insurance. I've noticed a lot of posts in here about heavy bleeding or non-stop periods. But, what does endo feel like if you're not menstruating?

I've been in terrible chronic pelvic pain, mostly on my right side. I had blood drawn, and all my hormone levels were within normal ranges, except for my DHEA-S level was slightly elevated. I also had an ultrasound done, that showed no ovarian cysts. Ulltrasound said my endometrium was .5 cm in thickness, but I had another test done by the GYN to get a better figure. ....will have the results of that when I see the GYN again in a few days.

The pain I've been having is mostly on my right side, but I also get it on the left side and in the center. Sometimes it's dull and constant....sometimes it's sharp and shooting. I guess it's a mix of pain from PCOS and pain from what I think might be endo. My lower back always wrenches up, especially when I have the pelvic pain. Over the past month, when I get the pelvic pain, I'm also getting pain in the upper part of my leg....like something is pushing against something.

The big thing is pain during and after intercourse.....nothing feels good....everything tightens up really quickly, and it's all involuntary. I don't know what all this could be.....but based on my research, I think it may be endo. If anyone else has had any of these symptoms, and can share some insight....I would realllllllllllly appreciate it. I go back to see the GYN in a couple days and I'm just trying to figure all of this out.

OliviaLeigh · 09-10-2008, 01:39 PM

Browse around some of the posts on the Endo board - I seem to ramble on here about Endo - but for good reason - I went WAY too long w/ Endo pain & suffering and it ended up damaging a ligament to my uterus.

Just to let you know - Endo needs to be diagnosed via lap surgery. Endo pain does not have to be present at all times - some women only have pain during their periods, some all the time, and some never have pain (the endo is usually found during fertility researching).

I had pain during intercourse which was not helping the whole TTC thing. I had pain after vaginal ultrasounds too. My pain was mainly in my lower left, but radiated throughout my entire lower back. I finally had to stop going to work b/c I was walking hunched over and I was running a fever constantly, had high bp, and high pulse rate - so I had immediate surgery. Don't get this bad, please!!!

My pain...well, it's kind of graphic. I pretty much felt like I was being impaled by something through the backside through my belly button and sometimes it would be through my vagina to my belly button. It would be difficult to sleep b/c everything was in pain. I thought forever I had hemorrhoids, but turned out to be assoc. with Endo pain. It got to the point I was taking 2-3 hot baths a day to help ease the pain.

I would hurt after intercourse for days (and still do unfortunately), but the actual act is not as painful as before and the pain is more dull than sharp. Sometimes I would cry after intercourse it hurt so bad.

I really feel for you and I hope you get some relieft soon. I usually take 600mg of ibuprofen for pain and I carry a heating pad EVERYWHERE - those disposable ones are great

Be careful w/ NSAID's though - as they can cause ulcers & stomach bleeding. If you are in serious pain, Rx pain killers can help.

Please let me know if you have any questions. I'm very open about all this b/c I was told for years that it was all in my head and that pain was normal, etc...and NO its not.

Hope you feel better soon.

Hopeful_in_08 · 09-17-2008, 02:31 PM

I was diagnosed with endo in 2003. My symptoms are SEVERE cramping (to the point where the doc had me try pain pills from tylenol 3-percoset) I also have really heavy bleeding especially at night. I have gotten to where I have to set an alarm to go off every 2 hours so I can get up to avoid a mess and doing that I still sleep on a towel(sorry I know TMI). Another symptom is I will bleed for weeks! At one point I was lucky to have 1 week off a month.

This whole time I was on various BC pills that did nothing. So in 04 I started taking Lupron shots (not fun at all!) I did those for 3 months and they helped some. looking back now my DH tells me I was almost unbearable with the mood swings!

Then I was still having problems so Labor Day Weekend in 05 I had my first lapro. The doc found endo EVERYWHERE...the procedure took 2 hours longer than it was supposed to he found so much. Anyway, after that I felt pretty good for about a year. Then it all came back. So...Labor Day Weekend in 07 I had a second lapro done, this time they also did a uterosacrial oblation (sp?) to kill some of the nerves. This time the doc found just as much as 2 years before, so we decided to TTC. Since then I moved and switched to a different doc and I really like him. So hopefully we will see some results soon!

Anyway, thats my story. If anyone wants to talk let me know, I am very open with everything! I had so many people tell me it was in my head or (my favorite) to get over it! That I am more than willing to talk.

Good luck to everyone!!

JessicaStillman · 09-17-2008, 11:41 PM

I have a question, mine is sort of similar I just had an ultrasound done because of this. Mine began with a pressure that something is pushing against my right pelvic area, and almost feels like something is pushing from the inside out. My dh has not been able to have any intimacy with me for the past month. Due to the sharp pain. I'm not diagnosed and I'm just trying to see if perhaps this could be endo..... Also I have had a few occurences where it feels like cramping and then my lower back cramps as well, it lasts for 15 - 20 minutes and then dissappears as if nothing is going on. Now I have sharp pain and I feel sick all of the time, headache/feverish, and drowsy. Could this be anything like you guys feel? I know you hit a few.

OliviaLeigh · 09-18-2008, 10:00 AM

Jessica - What are your periods like?

I would read up on the Endometriosis Association information to see if you fit the symptoms. Avoiding intercourse because of pain is def a serious issue! One reason my dr was so aggressive w/ me was b/c I would not have sex. She said that meant I was really in a lot of pain. She gets lots of women who complain of pain, but continue on like nothing is wrong. If it's impacting your life, then you should try to get to the bottom of the pain.

You mention headaches/feverish/drowsy, how is your bp? I had all those symptoms b/c my body was dealing with so much pain. Are you on BCP? Have you ever been and didn't have the symptoms?

Sorry so many questions...I just remember before I was diagnosed (and the waiting game). Being in pain and not knowing why is just the worst......

Kalyn · 09-18-2008, 11:37 PM

I just want to tell you...make sure you have a good doctor. The first doctor I went to told me that I didn't have endo....but that I had a fibroid tumor that was the size of an orange....he never did anything for my constant pain. The second doctor I went to did another lap on me....said my ovaries were consistant with PCOS, and that he had to clean off my bowel, but that it was nothing serious. A year later I started having severe pain again. I finally found another doctor.

My pain was similar to what everyone here describes. It was mostly on my right side, it would shoot across my lower stomach and around my back. At its worst my legs would hurt. It hurt to use the bathroom (1&2) and finally when it got to the point that I could hardly stand at work and I couldn't take it anymore I went to the local clinic here. They at first checked me for kidney stones because of how bad it hurt to pee and how urgent I would have to go. The doctor on duty started pressing on my stomach and when I cried out and told her that if she did that again I was gonna hurt someone she suspected my ovaries and recommended I see my GYN ASAP. That is when I decided to find a new GYN. She diagnosed me through my family history (my mom had endo bad and it almost killed her after she had my sister cause she hemorraged) and my symptoms. I did Lupron for 6 months, it did help my pain, but no one could stand to be around me. Unfortunately I am starting to notice symptoms again. I go see my GYN in November or December. I don't have periods on my own either, which is from my PCOS. So around Christmas time I am gonna have so much fun (sarcastic).

JessicaStillman · 09-19-2008, 12:02 AM

Olivia,

My bp is all over the place, I went to see my primary for back pain, which would come and go but it would also make the front of my stomach cramp up as well. My doctor told me to lay off all caffeine, I didn't stop with the caffeine, but when I went back 2 weeks later my bp was fine. (Of course that was during one of my good days). I can tell that my heart races and my bp is up most of the time these days, I also check it at the pharmacy where I go and get my prescrips from. He also mentioned I had blood during a urine test, I went and saw a urinologist (sp), he told me nothing was wrong.

I have been on quite a few different bcp since I was 12. The newest one I am on will start my flo, but it will not stop it without doubling it up. It is still as heavy as ever. I have to change almost every 1/2 an hour. The symptoms other than the heavy flow were not there before but the back and stomach cramping have come and gone since I was 19, but didn't think they coincided. I'm also on Metformin, and as Kalyn mentioned, it hurts to use the restroom (1&2) Right now I'm thanking God that I'm actually on Met.

My attitude I noticed has actually basically gone down the tubes. Most of the time I'm not even sure who I am. Especially with my dh. The poor man must be about out of his mind trying to just stay on my good side. Which I really don't think I have one. With the worry and the mood swings that are going on. I have no clue what I'm going to do.
The results to my ultrasound, they came back normal. Other than the cysts on my ovaries. None were overly big.

My primary is trying to locate a pcos specialist in St. Louis for me but has not had luck so far.

DiamondInTheRough · 09-21-2008, 12:58 AM

Hi Ladies,

I've been going through a gamut of symptoms lately. One of the cysters mentioned Endo to me (as well as an ER doc). I have an appointment with a GYN in October (I wish I could see her tomorrow!).

The more I read, the more terrified I am that I could have this disease. It's hard to know what is what anymore, all of these symptoms overlap so many other problems.

I have noticed my symptoms especially over the last few months. Despite being on the pill, my menstrual pain has increased significantly, my flow has increased, I'm having constant lower back/pelvic/leg pain which varies in severity throughout my cycle. The back pain can become crippling, for example (at the exact same point in my last two cycles). I literally can't walk when it's at it's worst. I've been having rectal bleeding the last two months as well (also at the exact same point in my cycle). I had intercourse once this month after af was over, and it was so painful I've been afraid to have it again since.

I'm feeling fatigue, nausea, (I think my hypothyroidism is being undertreated?). But I've read these can be symptoms of Endo as well.

Can Endo be seen on an U/S? I suspect that if I do have it, it is affecting my bowel and colon, too.

I'd appreciate any help.

OliviaLeigh · 09-21-2008, 09:02 PM

Diamond In the Rough - Endo really cannot be diagnosed w/ an ultrasound. You need to have a gyn that can perform lap surgery to diagnose. Endometriosis means that your endo cells are growing outside of your uterus, therefore, lap surgery is the only sure way to diagnose. Lap surgery is not that bad (out patient surgery) and it's def a relief to know what is going on inside. If you are having serious pain during/after intercourse, it's def time to seek help. Intercourse was very painful for me. You also sound like me as it became difficult to walk and sit on the toilet (yikes!). I walked hunched over with a bad look on my face trying to walk thru the pain. Don't delay getting help. Do you have a primary that could Rx you some percocet or other pain killers?

Jessica - Even on bcp, I have a difficult time stopping my period. It's quite indicative of endometriosis to have very heavy (and non stop) bleeds. When the endo cells bleed, even those endo cells outside the uterus bleed - which causes serious pain & scar tissue. That is why the period is so painful. My body kind of gave up on the pain which is why I started w/ the high blood pressure, high pulse, and fevers.

Have you tried to contact the Endometriosis Assoc. to see if they have a list of rec'd doctors in your area for Endo? Might be worth a try...I really hope you get some relief soon.

Stacie M · 09-21-2008, 09:48 PM

I was (finally) diagnosed with endometriosis during laparoscopy in 2006, although I had suspected I had it for several years. My pain dates back to high school, when AF would be so painful that I would miss school. For a long time, I thought that was a normal part of AF. My GYN in high school put me on BCP's, which did help quite a bit. In my early 20's another GYN prescribed pain medication, but never suggested endo. Finally my current RE did a lap and found endometriosis, but thankfully it isn't in a place that may interfere with TTC.

My pain is extremely sharp in the week or so before AF. It honestly feels like I am being raped by a butcher knife. It hurts to have a BM or urinate at that time. The sharp pains usually calm down after the first day or so of AF, and then I just have severe cramping and bloating. Sex is painful in certain positions, particularly those that change the angle or are deep.

DiamondInTheRough · 09-23-2008, 12:23 AM

Thanks ladies.

Olivia, the thought of another surgery is horrid to me right now (I'm two months post-op from my gallbladder removal). But you are right, a lap is much less invasive then most surgeries. Also, I've read that if they do find endo during the lap, they will probably remove it on the spot. At least that will save me a surgery (that's IF I have endo!). I've had surgery in the past to repair a septum in my uterus. I bled FOREVER after that surgery, at least a month straight. I had very bad anemia, you could have knocked me over with a feather. As far as pain meds go, I'm scheduled to see my GYN right around the time the severe pain has been showing up, so I'll be sure to ask her for something.

Stacie - I am so sorry about your pain - that sounds horrible! What do you take for the pain? I'm glad your fertility isn't compromised with the endo.

Speaking of af - do any of you get a type of cramping in the rectal area during your period? I've had this for years, it's like a spasm or sometimes it feels like I'm being electrically shocked. It can get pretty strong and hard to move or find a comfortable position when the pain is there. Passing gas during the pain feels like I'm passing glass instead. I find that advil helps taper it off.

OliviaLeigh · 09-23-2008, 10:38 AM

Yes! I get the rectal pain. I actually had it last week at a dinner party. I was sitting in a chair and all of a sudden pain was shooting up from that area through to my belly button at the same time it was shooting like through my vagina to my belly button (this was the first time I'd felt this pain again since surgery - all the time before surgery). So I kept trying to re-adjust in my chair and I just know I had an awful look on my face. I was trying to eat, but I had to sit back a bit so I could breathe b/c the pain was so bad. When I wanted to eat I had to lean forward and then I could feel the pain again. Needless to say, I barely ate anything and was in pain AND starving by the end of the night!

I would get this almost non stop before my lap. I would have to get up from my desk and try to walk or if I was at home - take a hot bath. One thing that I think is helping is my daily dose of evening primrose - my pain has been less, but I started it right after surgery so it's hard to know which has helped more, but I like to think I'm on the right track

I really feel bad for you just coming off of another surgery. Hopefully your dr can come up with a solution so you aren't back under so soon. I know the important thing w/ Endo is to keep it from growing. If you are on Lupron or BCP the theory is that Endo will not grow/spread. You don't want it spreading b/c then it can start growing and sticking everywhere and that is when you start to have (or can possibly have) fertility problems.

I hope you get some pain meds soon as I know that will help your body relax a bit more and not have to deal with so much pain.

DiamondInTheRough · 09-23-2008, 05:00 PM

Olivia, ah well, thankfully I don't need to worry about fertility issues any longer. I went through years of it, and am thankful to have my two little boys. We don't plan on anymore children, so at least there is less 'urgency' in that respect.

I am currently on bcp - can endo still occur/grow while on it? I've read most non-surgical treatments require the use of male hormones, essentially. The thought of this makes me ill in so many ways. I don't think I could ever physically allow myself to knowingly injest male hormones, considering what PCOS has done to me.

I can't believe this rectal pain I've been suffering through during af could be related to the endo! Your pain sounds exactly like mine! I've always just figured it was "normal."

Now, can endo have dorment stages? I can recall some unmedicated af's that had me in bed the whole week, but others that weren't so bad. Can it go away on it's own?

I know these are all q's for my doctor, but since so many of you have been through it already, I'd like to equip myself with as much as I can before I go in (Oct 9).

OliviaLeigh · 09-23-2008, 06:50 PM

Diamond - I'm so glad you have an appt coming up

I would def bring up the rectal pain. It's just not right if pain keeps you from doing things you like/enjoy. For me, I wouldnt' go anywhere and was missing 2-3 days/week from work b/c it was too painful to make the hour commute in the car. Sometimes I'd cry the whole ride home b/c I was in so much pain - not normal. Although people would tell me it is normal - and yes, cramps are normal, but pain to the point that your body doesn't function - not normal!

Lap surgery is def the easiest - go in, clean it out. It helps a lot. You can be put on BCP or Lupron after surgery to prevent it from growing. I'm not sure about dormant, but you could check out the Endometriosis Association for more information on that. I've read their 2nd Edition of Endometriosis and really liked it.

I was on BCP and I still had pain from it. So, I do believe that sometimes even if you are on BCP, you can still have pain from Endo.

I really hope you get the help you need. Let us know how your appt goes

DiamondInTheRough · 09-24-2008, 12:21 AM

Thanks, Olivia! I guess over the years, we just get so used to accepting things, and so tired of seeing doctors who tell you it's "normal." Thank God for this site.

I will definitely keep you all updated!