Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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SSWarning 08/22/2009

I'm pretty new to this site so bear with me. The last few weeks I have just been reading the posts and I find there are alot of caring people on here and I thought maybe someone here could give me some insight.

Just a little history: I had been having pelvic problems for several years.(cramping, heavy periods, etc.) I finally went to a doctor and she set me up with a female gyno. She gave me several options to figure out the problem. At this time I got off birthcontrol for many reasons, the main one was I had a very bad experience with the Plan B contriceptive, in fact, that is where all my problems started. My hormone levels were completely out of wack, my husband was afraid of me so I got them back on track and haven't taken anything with hormones in it ever since. Most of the options my gyno. gave me had to deal with hormones ( birth control, Lupron, etc.) so I took a long hard look at the pamplets she sent home with me and with the fear of hormones, I decided on lap. surgery. This was performed on May 22,'09.

Present day, I am having pain on a daily basis, cramping, long heavy periods ( and getting worse by the month) and it is getting progressively getting worse. The weird thing is I am having strange pains on my left side that I never had before the surgery and it's spreading! It started in my left ovary area and has spread up and out. Down my leg up to my ribs into my back, like a big oval. It almost feels like a pinched nerve and then it will go into "charlie horse" mode. It almost feels like there is something in my side. It is really hard to explain, and just imagine the looks I get from my doctors, of course they don't listen to me. I ended up getting rid of the female gyno. for this reason. She wasn't taking my pain seriously, she kept telling me I'm "ovulating"! I don't think I've been ovulating for this long. After weeks of this banter, she suggested I go on antidepresants and seek counseling. That was the last straw, I dropped her and started seeing a different gyno. I still have gotten no where, and they think I'm making this up and are treating me like a "drug seeker". I am currently waiting for a state funded health insurance to kick in so I can start Lupron shots. (And yes, I decided on surgery without health insurance which shows how afraid of hormone therapy I really am! ) I decided on surgery so I could avoid this and I realize that doesn't always work but I didn't think my pains would be like this after words!

Does anybody have insight on what I am experiencing and what to expect from Lupron? This pain on my left side is getting worse and my biggest fear is the Lupron does nothing but make me crazy. Then what, hysterectomy? Same boat. I am 38 years old and my husband and I are not planning on having children but...
I've read alot of the time a hysterectomy doesn't even help.

Thank you for reading!

deleted_user 08/22/2009

hi hun,

i know exactly how you feel. i hate taking birth control it makes me so sick when i take them and yes i have the pain throughout my body that radiates as well. and i never had these symptoms until after surgery. anyways everyone is different when taking meds. some women have had bad experiences with lupron and others have had good. it does send you into menopause so you may have hot flashes, low sex drive also the first time you take it it increases estrogen causing your symptoms to be worse at first then it will take effect. when it comes to a hysterectomy it also depends on the woman some feel relief others dont.

good luck with everything

sabrina

deleted_user 08/22/2009

Your pain sounds a lot like mine used to be. After I had my surgery I didn't have any pain, then it all came back 2months later, only the pain radiated this time and felt like charlie horses in my legs, butt, back, and ribs. My dr. told me that as a side effect from the endo and the surgeries that My muscles are all too tight and it causes the muscle from my belly button to my toes to spasm really bad. She put on the birth control shot and I'm taking flexeril while waiting to start physical therapy to loosen the muscles and my pain is almost non existant. I still get charlie horse feeling at night but not nearly as bad. I get a pinching feeling right where my ovary is too. That got unbearable so I went in and she gave me a lidocaine shot right into my muscle where it hurt and the pain went away by that night. ANyways, it's just something to look into before resorting to Lupron. It's called Pelvic Floor Dysfunction.

deleted_user 08/22/2009

From what I understand about PFD a major sign of it is burning when you pee or have any kind of sexually activity. Also, since the muscles around there spasm and contract it can make it hard to have bowel movements also.

deleted_user 08/22/2009

i have that same feeling of 'something' being inside that is out of place/ or that shouldnt be there. its so intense it causes an immense preassure on my body... i sweat, shake, and get light headed and dizzy.
for these two years i have also had to put up with horrible docs and specialists telling me im crazy and that suggested antidepressants and a psycholigist !! - im completely normal... and to be emotional at an appointment you wait months for and have all your hope in them is very normal !!!
i also get the leg / hip / buttox ... inner lower back pain... it all comes from the inner lower back, feels like im b;eeding inside and i can feel blood shedding !
xx

deleted_user 08/23/2009

My pain seems to get worse every month. Two years ago my pain started, i relised that id get periods cramps alot..like a dull ache but then theyd get sharper about two weeks before my periods due, it used to be only on my right side though. I always had really sore periods but used to get cramps about 3 days before not 2 weeks.

I now get pain that starts on my right side, goes up my hip into my tummy and back. I get the same feelings on my left. I get bowel problems too, i used to get a wee bitty constipated before my period (was told i have ibs becos of this) but now i get constipation and diaherah the week running up to my period. If i have alot of pain i find i gotta shoot to the toilet!

The pain i often feel on my left side is like a dull barely there pain alot, then il have moments wherei get a sharp pain like a knife digging through me. It feels as though something at the front of me is stuck to the back of me? i really cant explain it, its a very weird feeling. I cnat stretch out right or anything cos it hurts and feels like something is being pulled on.

I get sore bowel movements too.

deleted_user 08/23/2009

sounds like adhesions princesspoppy

deleted_user 08/23/2009

hey there, im sorry to see that your having such a hard time. i have thoracic endo which is endo on the lungs, i have had it since i was 14 and just found out about a yr ago now... so 6 years undiagnosed and i would be in constant pain during my cycle, some in the pelvis but the worst is the right lung, some how the endo is getting through holes in my diaphragm and latch to the lungs and then i get a cycle which also comes out of my mouth. and all the doctors couldn't figure it out, they treated me like i was off my rocker, and saying its all in my head and everything like (yes im magic i can lean over and have blood pour out of my mouth cause im magic) finally one doctor listen to me at the hospital after i passed out on the emergency floor and he took me serious and found out that i needed a blood transfusion cause i was losing so much blood like a normal kind of heavy cycle plus the gush of blood that would poor out of my mouth if i leaned over. Now im with a great family doctor here and after seeing a lady doctor for 6 before , She told me she didnt know what i had and told me not to see her if i have another episode cause she cant do anything for me. at this time every cycle i would be be ridden and passing out all the time and my heart rate was around 145 150which is really high. My pain is also almost all the time no matter what meds i take to stop the cycl it ends up braking through and then i spot on and off for sometimes 6 weeks in a row and thats when the chest pain kicks in and just nomal relaxed breathing kill. but now im hooked up with a thoracic surgeon to operate and get the endo off the lungs and his team of doctors are awesome. and the one who discovered this was my general practitioner, when i saw him for the first time he took all my info down all my vitals and symptoms and he called that night and told me he was up all night trying to figure it out and he was right. so after being treated like a crazy person i finally got a good group of doctors. so your not alone, alot of doctors are asses all around the world i see. dont give up you will find a great team of people like i did and finally the ball is rolling, its 4 hours away for me and i go at least once a week, but they have surgery and everything set up for me to remove the endo from the lungs and i have only been with this team since june and hopefully by the end of this month or next it should be gone... but dont let these doctors get to you, my doctors said when a doctor treats you like your crazy is mostly because they dont know whats wrong with you and can't figure it out so they take the easy way out and say its all in your head...
hope this helped knowing your not the only one getting pushed aside by doctors. you stand your ground and get the best help you need and deserve * =)

Kristyrose03 08/23/2009

Hi there!
I think we all completely understand, takes an average of 8years or so to get diagnosed. Took me that long! Before then it was "all in my head" yes, because a 10yr-old girl bleeds through tampons and pads and loses huge clots for 2weeks every month and can't play with her friends....because it is in her head lol doctors are pretty useless with endo patients in so many cases. Sounds to me that you may have adhesions. I know that pain very well, and surgery can cause them (they don't tell you that part!) I also have bad hormonal reactions to meds. The progesterone I needed to maintain the pregnancy threw me into antenatal depression. Stop the shots, and I am back to normal! All the meds I tried have varying levels of success, but not much at all. And the hormonal reaction I honestly believe is worse than the pain!! Emotional pain hurts, and hrams relationships too. So I really do understand the fear of hormonal treatment.... You are right that hysterectomy does not help in a lot of cases. It really depends where the endo is and how severe. Although symptoms and severity are often not related.
You had surgery only recently, it also happens to some women that they get a whole lot worse for a few cycles before they get better. That happened to me with the second surgery (first one just made me worse, unfortunate but not common!!!) So it could be your cycles settling down... My best advice at this point would be to find a gyn that is endo experienced!! I never had any relief from the endo, or anyone believing how bad it was, until I found my specialist -who is actually a fertility specialist! That is also another route you could try before anything more serious. She had me do biological tracking, and that can often find problems in your cycle that can be corrected without flooding your body with hormones as a treatment.
Let us all know if you have anything you want to ask us or discuss!! Happy to talk you about anything :) Sorry that you are suffering like this xx

SSWarning 08/24/2009

Thank you all for your insight so far!!! I have been asking about my strange left sided pain for months! I finally got some answers!! I couldn't find anyone else that has experienced this.
I just had a really bad weekend due to pain. I tried to have my Rx pain meds refilled on Thursday and my GP was on vactation and the on-call doctor refused to help me. Thank God I didn't have to work all weekend!!!
But my GP is back on Monday so you all have helped me make up my mind, I'm making an appointment and expressing myself once again. Most of the time she seems pretty good about listening and "going up to bat" for me. She's the reason I was able to get my first ultra sound done.

Thank you all sooo much!
I will continue to use this forum and help in any way that I can to "pay it forward" :)

Kristyrose03 08/24/2009

Just a thought, you could try printing off some articles about endo with all the symptoms listed and how it affects women... Do you think that would help??

deleted_user 08/24/2009

i did that too ruth. for months.. and take them to docs to defend myself ! lol

deleted_user 08/24/2009

I am 38 also. I never went on lupron. I was to affraid to so I chose Depo provera. That didnt work either. My periods were every 2 weeks for 2+ years and the lst year was horrible!!. Like you, I went to a female gyn and she didnt take me serious so I told her, her services were no longer needed but then I kept going to other gyn's who said they could help me but that didnt work as well. During my 3rd gyn he told me I needed a hysterectomy and I went for a second opinion from a surgeon and I had it done Feb. 09. It took care of my Adenomiosis but not my endo or adhesions. A hysterectomy is a chance you take. Either they get all the endo out and your good or it doesnt and your in pain all the time. I went to another so called endo specialist and everyone telling me I made the right choice. I had my lap July 9th 09. He did such a hacked up job on me. My husband said before he knew it the doctor was out of surgery saying he cut out adhesions and that was it. We knew we had made a mistake when this happened. That and during post op visit he had no notes, nothing to tell us. I drove 4 hours round trip to see him. I look back now at everything I have done to try to get out of this horrible pain and I wish I just went to a real specialist from the begining. I am now and I am waiting for the call this week with the appointment date. I'm going to MN. Be careful when it comes to the shots and ask if you can take them in weekly doses. Some women it helps a great deal and they love it. Some women it gives bad side effects and when they give you that shot you can not reverse it. It stays in your system for as long as its intended to. I was bed ridden for 3 months before my hysterectomy and taking that shot made me wish some thoughts I never thought of before. I dont want to scare you but just be your own advocate cause some doctors can be very understanding and want to take care of you but do they know what they are doing when it comes to endo? Look at there education and see if they are in any assosiations for endo..pelvic pain..adhesions..I truely wish I had done this as my insurance company wont let me go to a fertility specialist since they are the one who are the actual specialists but I have found one that my insurance will cover and he doesnt title himself as a fertility Dr. Look very hard so you are not going through several Dr's. Good luck with everything!! I know your pain.

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