Possible Endometriosis?

[frustrated34]

Since I was in the 7th grade I have had extreme pain with periods.  It has only gotten worse over time and I bleed very heavily even on the pill.  I now have pain with bowel movements during my period and always get horrible diarrhea.  I also get breakthrough bleeding even when taking my birth control religiously on time (I only take it for regulation as I am a virgin).  I actually just spent 4 days in the hospital because of severe lower right quadrant pain (appendicitis was ruled out) that was so bad it was causing nausea and vomiting.  They did a CT scan, ultrasounds, a colonoscopy, and x-rays but didn't find anything.  I asked if it could be endometriosis but was told no because it doesn't cause nausea and vomiting...  I was sent home with no answers and still in pain.  I have an appt to see my reg doc next week for follow up and to see my regular ob/gyn.  Any suggestions as to how to get them to do the laproscopic procedure or what else this might be?  I am getting beyond depressed and just don't know what else to do...

[frustrated34]

I wrote to my surgeon and decided to just go ahead with the surgery. I am tired of the pain and want to know for sure if it is endo or not and if not then what is causing the pain. This month was just as bad as last month and the only thing that kept me from going to the er was that I knew they wouldn't do anything and I had left over pain pills to take for the worst of it. They took the edge off so I could breathe and the nausea meds allowed me to keep fluids down. The only positive so far is that I have lost 15lbs without even trying. Gotta find a silver lining somewhere.

[ticked]

I honestly haven't heard good things abou Kaiser but let me ask around brb

[frustrated34]

Unfortunately I cannot afford to go to a specialist outside of kaiser as I am out of work.  The doc I saw at Kaiser is at least agreeing that endo is possible.  She to just treat and see if the symptoms improve over the next 6 months.  She recommended either a 5yr IUD or a 3yr implant in my arm to suppress my menstrual cycle.  If things don't get better in 6 months then she would schedule a laparoscopy.  She doesn't want to do Lupron at this point as the long term studies on future fertility haven't been done and I do want kids in the future.  I am kind of wanting the surgery done though because from what I have read, having the endo taken out AND suppression therapy seems to be best.  Also I want to know for sure.  She asked me what if she were to go in and not find endo... At least then I would know that isn't the issue and maybe they would see something to explain my symptoms.  I just don't know what to do.  I am tired and frustrated and just exhausted at this point.  I am trying to take care of my 84yr old grandmother as well as working part time as a nanny while dealing with all this.  I guess I am just getting overwhelmed. I am going on a mission trip in June and kind of want to make sure I don't have a debilitating flare up while there.  Would I be crazy to push for the surgery or should I just follow her plan?  I am also supposed to be the maid of honor in two weddings this year.  I appreciate any advice you may have.

[ticked]

If you are interested you have two of the most amazing top Endo specialists in CA.


Dr. Andrew Cook
Vital Health (http://vitalhealth.com),
14830 Los Gatos Blvd,
Ste 300,
Los Gatos, CA 95032
T. [phone]

Specialisation: GYN only
Bowl/urinary tract surgery: Does most bowel/urinary tract work himself and has a colorectal surgeon on hand to assist when needed.

*Dr. Cook's practice offers a functional approach to treating endometriosis

.
Dr. Camran Nezhat
Center For Special Minimally Invasive & Robotic Surgery (http://www.nezhat.org/),
900 Welch Rd
Ste 403
Palo Alto, CA 94304
T. [phone]

Specialisation: GYN only
Bowl/urinary tract surgery: Does some bowel/urinary tract work.


It took 14 yrs to diagnose me so I understand the frustration. If you read my journals you will see that they are typical symptoms just not the symptoms that doctors or Gynos have educated themselves on. Most doctors only get probably a day course in Endo and gynos maybe a week and they all are being taught about a theory from 100 yrs ago which has since been contradicted and updated but not seen around the world as new information. Trust me when I tell you this... See one of the two doctors I mentioned. You will not regret it.

[frustrated34]

I am in Antioch, Ca.  I am going to see a specialist today that my ob/gyn referred me to.  She is supposed to be the head of the department and a surgeon so I am hoping that she will take me seriously.  I have been having symptoms for at least 14yrs now.  I have seen the symptoms that I have listed by others even though some are not "typical" of endo and when I talk to my doc she said those symptoms aren't part of endo so maybe something else is causing them.  Apparently if it isn't in the medical books then it can't possibly be associated even if other patients have reported the same symptoms and it has been proven to be caused by the endo...  Anyways, I will see what this new doc says today.  Prayers and thoughts appreciated.

[ticked]

I can ask around as I know a multitude of Endosisters out there and i have heard of that insurance company. Where about's are you?

[frustrated34]

Thank you for your response.  Unfortunately I have Kaiser for insurance and it is difficult to get to a specialist.  My ob/gyn is actually only a Nurse Practitioner but after talking to her she did refer me to a doctor who is a surgeon.  I have to wit for two weeks for that appt.  I have been keeping a sort of journal and as an RN myself I am learning that I have to be my own best advocate.  These symptoms have already been going on for years and I am tired or getting the brush off.  I am going to try to push for the laproscopy.  It isn't that I want to go through surgery and I know that there is no definitive cure, but I would at least like to have a diagnosis so that I know there is a reason for the pain.  They actually ordered a psych consult on me after the usual tests were negative which just devastated me at the time since I was already in so much pain and dealing with so much frustration.  I was very happy to find this community and see that so many others are having the same difficulties as me.  It was uplifting to know I am not alone.

[Endo_Chick]

Period pain that gets worse over time or starts hurting during other times of the month can definitely signal endometriosis.  The only way to diagnose it is through a laparoscopy.  

Many doctors brush aside complaints of "cramps" assuming that all women have them and it's no big deal.  But if your cramps are debilitating, you need to insist that it's not normal and demand further exploration.  Sadly, the average time between symptom onset and diagnosis with endo is 8-12 years.  Yes, years.  

Find a good gyno who listens and takes your complaints seriously.  Make a daily pain chart for a month, using yellow for no pain, orange for moderate pain and red for severe.  This is what helped my gyno finally say "you probably have endometriosis, here are your treatment options."  Keep a pain journal and jot down a list of concerns to talk about at your doctor's visit so you don't forget anything.  

They've already ruled many things out with other tests, so there's a good chance you have endo.  1 in 10 women have it, so it's certainly not rare.  

[DHof]

I'm sorry you are feeling so awful.  It very well could be endo but it requires a definitive diagnosis.

When my biopsy of a muscle mass came back as endo, my surgeon suggested that I stop dealing with ob/gyns and find a "real gyn".  My old ob/gyn was not interested in finding out the cause of my symptoms.  He buttered his bread taking care of pregnant women and delivering babies.  He claimed that my issues were merely mittelschmerz.

I found a reproductive endocrinologist after that biopsy.  He specialized in hormones/endometriosis/infertility and general surgical procedures of the gyn sort.

You might have better luck if you also find a gyno who does not see pregnant patients and can focus on women's health issues.