My gyno thinks I have endometriosis

[JessieJ21]

I have a laparopscopy coming up soon after my physical exam on the 10th. I am in severe pain, my lower back, buttocks, hips, groin, and pelvic area hurt bad. The pain is so unbearable when I start my period I can't even move even sometimes narcotics don't help the pain. Also have pain during intercourse occasionally its embarrassing because sometimes I can't bear through that pain either. I also have a "left adnexal mass" they aren't exactly sure what it is first it was just a cyst, then a hemorrahgic cyst, then an unfuntional ovarian cyst with a secondary hemorrhagic cyst growing on it, then my gyno calls it a dermoid by accident then laughed unless that's really what she thinks it is, but she also says she thinks i have endometriosis because of all my pain, and I have no children be trying for a couple years or more so I must be infertile. She says when they go in and look she will be able to take a look at my "dermoid" (as she thinks it is maybe) and maybe remove it and any endometriosis tissue. Does anyone have a similar story or want to talk? I was worried it was something besides endometriosis because I am also losing weight, because i have no appetite most the time, constipation alternating with diarrhea,  I'm so tired and weak, I've had recurring vaginal infections, chills, excessiv sweats/night sweats, swollen lymph nodes ect. anyone else?

[lulu747]

Honey I feel for you.  I totally am in the same place and have developed terrible anal fissures from all the constipation/diahrrea.
It's awful.  I hate this disease too.
Just know it isn't permanent and you will get help and relief soon.
Sending you some hugs today...
Lu

[ticked]

True. I was on it for 9 months and that is the max anyone should be on this but some doctors keep patients on this drug for so much longer and 1 out of the 3 times I used the add back therapy and it made no difference whatsoever. After a month I went into a deep depression every time. It is not worth it. Erin Brockovitch is doing some class action lawsuit against them at this moment if I am not mistaken. It is a horrible drug that doctors still use to diagnose or treat endo instead of doing surgery. It is sad that some people don't know any better and take it because they feel that because the doctors has said to then you have to.  

[JessieJ21]

I haven't read very much good about it especially that if you use lupron alone you could get osteoporosis and if you use add back its supposed to help that. but they say add back isn't good if you have epilepsy (which I do)and could make my depression worse. So I refuse to try it with add back or alone for the fact that I don't need to make my other conditions worse I already have osteoarthritis don't need osteoporosis this young too.

[ticked]

Good choice. If the pill works for you keep taking it. Lupron has way too many side effects and some permanent and does the same thing as the pill.

[JessieJ21]

My gyn suggested lupron today at my follow up. I just told her no that ill just keep on the birth control pills. I really don't want lupron that will probably not be good for me.

[JessieJ21]

Thanks that sounds like a possibility since I don't know how thorough she was. I hope I can get an appointment with an excision specialist soon.

[ticked]

It is possible you have rectovaginal Endo and if the surgeon you had surgery with didn't even look there (as most wont if inexperienced) that could be why you are having pain

[JessieJ21]

I don't understand my cramping and pain and it happens even if I have a soft or loose bm. Is lax a day different than miralax the stuff I mix in my water or juice? Because that and the stool softner pills colace make them soft/loose but I don't know why it still hurts/cramps up so bad in my abdomen and pelvic about 20 -30 minutes before i have to go all the way. until I actually go and sometimes it continues until I'm completely done.  I don't even know what to do anymore. I just want to die when I feel a bm coming its pretty close to my menstrual pain and I can't take that once a month and now this at least once or twice a day :( I HATE ENDO! I feel so bad for you lulu still no surgery for that? I can relate to the pain but I can't imagine bleeding profusely! I hope you can get well so that has to suck so bad. I am so sorry :(

[ticked]

For me Lax-a-day helped a lot. No pain with that one and it comes out soft.

[lulu747]

I need to try a new stool softener my rectum is literally torn apart and bleeding profusely.  Every time I have a BM I feel like blacking out.
Which is the best one ladies?

[ticked]

:(

[JessieJ21]

She prescribed me colace stool sofners with my pain pills, I am also on miralax daily suggested by my gastroenterologist months ago It helps me go but doesn't make it anyless painful :(

[ticked]

did they not tell you to take stool softeners? I took them for a month because I didn't want the anxiety of anticipating the pain . I also used lax-a-day as well which is a none habit forming laxative. My Gastro recommended it a year ago.

[JessieJ21]

Thanks You're very helpful and I appreciate you and Ticked, I'm glad I know who I can talk to about these kinds of things because you can relate. I'm going to see what I can do about seeing the Doctor in Kalamazoo who takes my insurance. He does excision and that would probably be my fastest opportunity since Ill only have to come up with enough gas money. Ill let you know when I know more.

[lulu747]

It could be from the surgery.  My BM's are excruciating right now and I am bleeding rectally.  Restorolax helps me.  You need proper surgery honey and soon.  I'm sorry you are suffering- just know you aren't alone.  I'm here with you.  We can be endo buddies!
xo
Lu

[JessieJ21]

It hurts really bad in my belly right before and during a bm. Its so unbearable it used to not be everytime but its becoming an everytime thing.. Or Could it be from the gas they used during surgery and it will get better? If its the endo what can help besides use of miralax, colace ect. I already use..

[JessieJ21]

Thanks so much! Unfortunately she does not do excision but I was looking into Dr. Dalm whom does it, but doesn't take my insurance although Id raise money if I had to but I was on a Endo group for facebook and had a few girls recommending surgeons around here. Actually Dr. Barki from West Michigan's Cancer Center in kalamazoo, Mi was recommended and he takes my insurance . I hope you will be able to have your surgery soon. I know how bad you feel and I wish you well very soon!! I will let you know more of my excision when I get it all figured out(: I want you too keep me informed also! That site was fightlikeagirlclub.com I believe.

[lulu747]

Glad the surgery went well and it was endometrioma and not a dermoid.  Did she excise the endo?  How are you feeling?  I'm in full panic as my doc got called out of the country for a family medical emergency and I still have not surgery date.  I am waking up screaming in pain every morning.  What was that website you mentioned with inspirational stories about endo?  I need some hope right now.
Sending you healing vibes
Lu

[JessieJ21]

Surgery went well I didn't get to talk to my gyn after but she talked to my fiance and gave him pictures. It was actually an endometrioma not a dermoid, she said she drained that. She found another cyst on the right we didn't know of an removed that. She found Endo on my uterus she didn't tell me a stage but said it was not mild but not severe either. She did the blue dye test and my left tube is great and my right is a little blocked up from scar tissue.

[ticked]

I will look into that for you today and I will get back to you on him :)

[JessieJ21]

Thanks Hun, I am already going to do gofundme.com Was wondering if there were more and if I can set up more than one.. I wish you luck with the blue dye test and hope you will know about surgery soon. I do think we are stronger than we even feel, I do feel very weak at times but you are right we are fighters. I love the site fight like a girl, there's endowarriors on there as well as all kinds of cancer survivors. Their stories are inspirational. Although I read some stories and not just on there that scare me like a story the other day of a 24 year old with a dermoid that turned out to be stage 1 aden carcinoma. Im hoping for the best but it is scary that it could be cancer or become cancerous so I'm so glad they are finally removing it. I've only had it for 3 or 4 years but it still scares me that someone so young can still have cancer. Thanks for thinking of me I think of you girls often! & Keep you in my prayers<3

[lulu747]

This sounds positive.  I'm sure Ticked will chime in with her wealth of knowledge.  I'm getting the blue dye test done as well when I finally get a surgery date (still nothing going crazy!!!!)
Do some fundraising.  If I was there I'd have a fundraiser for you (I am pretty much a professional fundraiser)  Just do whatever you can to get that excision done.  
Keep in touch and PM me if you need anything.  This site is so slow so I rarely check it.  I've been thinking about you.
It's Endo Awareness Month-
The slogan is We Didn't Know We were this strong until we had to be.
Appropriate, no?
I don't feel very strong right now but I am fighting.  With you in solidarity.
Lu

[JessieJ21]

Thanks ladies. Have you heard of Dr. Dalm in Grand rapids, Michigan? He does excision. He doesn't take my insurance but I think I could raise enough money since he's not too far from me. I contacted his office already I just would like to know more of him if anyone knows. They told me he could do my excision, & that he does it a lot and that he would except payment out of pocket. I told them I don't know how long it will be until I have enough for the surgery but the initial consultation is not that much and I told her I contact the office again to schedule when I know that I have the money. She did say she suggests I get my Dermoid situation taken care of asap so I have surgery Monday just hoping she won't have to take my left ovary, she says its a possibility but only if she has to. She said she will send it for a biopsy. She's also doing the blue dye test on my tubes to make sure they aren't blocked with scar tissue. I am only on Birth control pills for now

[lulu747]

Hey Jessie-

Sorry you are feeling this.  Sad to say me too.  Also, every night I swell so much I look 6 months preggers and my lymph nodes in my groin are so inflamed I can barely walk.  The right shoulder pain is common with endo.  I know it's so hard.  I am praying you get the right doc and treatment you deserve honey.  I am here with you in solidarity.
xo
Lu