Can Endometriosis Pain be Incapacitating and Chronic?

[freedam18]

Short story.  We are suspecting that my 13 year old may have endometriosis.  All the tests so far have shown nothing (MRI, Unltrasounds, etc.).  Even though the worst pain has come with the arrival of her period, the doctor says endometriosis does not cause this much pain.  She has missed three months of school.  I am almost ready to take her to the emergency room.  The pain will not stop.
Thank you.

[Endo_girl2]

Though most pain is Endo related keep in mind that spinal problems (slipped disks or pinched nerves), gallbladder, and pancreas. Most of those, though not good can be more easily diagnosed and treated. The BEST option at her age is to try all the different types of Birth Control on the market starting with the low dose like Loseasonique and moving up to shots (be sure they start with Provera and not Lupron), patches, or vaginal rings. You could also get her into pain managment or ask her GYN for a referral until she finds the right birth control for her.

By the way, CTs, MRIs, and ultrasounds do not normally show endo tissue unless there is stage 3 endo or higher. Im 19 now and was in the same position, and am still fighting a daily battle with pain and endo, so I know how frustrating it is not to have answers for your daughter.

Dont give up hope and the best way to know what is best for her is to do your research before going to the doctor and dont be afraid to ask LOTS of questions!
Best wishes to your daughter!

[freedam18]

Thank you so much for the support.  It iss so sad that it takes so long to be diagnosed with this.  We are hoping for some answers and at least some alleviation of the pain soon.

[freedam18]

Thanks so much for all the information and support.  Your suggestion of a list for the doctor is a good one.  It is so hard to know from talking to the doctors if this could all be from Endo so it's really good to speak to people who have experienced the pain.  The plan is, though, to hospitalize her again this week with a comprehensive medical assessment to see if they missed anything, and then, if, not, to include the pain management team.  Now that we have a diagnosis, they are willing to prescribe. Also, the concensus is that surgery is not helpful at this age since they may not see anything anyway.

[Keyan]

thanks for your message.

I wanted to add, that YES having issues with urination does have something to do with endo....again, I can only speak from my own experience but since I've had my lap and lupron treatmeants I haven't had pains going to the bathroom, but before when I was on my period, if I had to hold to go the bathroom it would be so painful right after I would empty my bladder, I had pain before for holding it (not that long) but it was even worse after I empty it. and to go to the bathroom for number 2, it was another awful exprience during my period....the only way I can describe it is like just imagine a really bad bruise (sp?)  and very irritated and then when you go have to go the bathroom the pressure it puts on it from the bowel movement and the full bladder, it was like many sharp knifes cutting my insides with a burning sensation...aggrrr just awful. also, if she doesn't go frecuently to the bathroom and suffers form constipation, I have a friend who's daughter was in the hospital for the bad stomach pain and doctors didn't know what was wrong with her and also offer her psichological help because they thought she was faking it and after like a month it was that someone found the compacted stool and since then she has been on a fiber diet and she has been pain free, she was around 10years old then.

I really hope the specialist you are seeing today is able to help her and once again, I am really sorry for all the she and you having been going thru.

one last thought, I would and still do a lot of research online when I feel something and have doubts and would make a list of things to ask the doctor, most of the times I am really off, but I have found a lot of help and understanding of what is going in my body this way.

[teddybears4ever2]

Actually yes Endo can be very painful. The amount of pain you are in, in no way determines what stage Endo you have. I was in pain for 11 or more years before anyone did anything for me.
Let your daughter know she isn't alone.
Endo can be very hard to have both on a mental level and a physical level. Endo is also one of the hardest diseases to diagnose. If you feel that she may have Endo you should take her to a specialist.

[freedam18]

Thank you so much for your answer!  It brought tears to my eyes!  OK.  Here's the deal.  You wouldn't believe the kid's history.  Too long to describe (except for parasite; appendectomy; ehrlichiosis; salmonella).  But after an 8 day hospitalization (for 5 days of those they told me she needed psych help)  they found very little.  These are the  things they found in the hospital:  mesentary adenitis; impacted stool:Since then: stomach erosion; ileium nodule; some ovarian follicles in each ovary (which the radiologist's report says are normal); some disc bulges and degenerative disc disease.  She's a complicated kid and luckily is very distractable so she can be distracted for about 10 minutes at a time at this point and then excruciating pain.  Truth is, the pain in the hospital was nothing like it is now.  Now it is constant and incapacitating.  I realized that for the past three months it came around her period.  They didn't mention endometriosis at all in the hospital. I had a friend who's daughter had it and I remembered her pain.  So I started to ask about it. A family physician put her on Synarel spray last Tuesday (she is too phobic about shots).  Thursday morning she woke up and got out of bed for the first time in ages and did a project for hours at her desk!  She says the burning during urination stopped when she started the Synarel (I certainly didn't suggest this)!  Family members who are gynecologists (male) say A:  endo can't cause this severe pain; B: none of the radiology tests showed anything and they would usually (no surgery yet) and C:  the stopping of urinary burning is not a sign of anything good (I was so hopeful it was a positive one) because urination is not affected in endo.  We are finally seeing a specialist in adolescent endo tomorrow.  If she has no thoughts, I don't know where we'll go next.  Thank you so much for the encouragement.  I hate to say it but I really hope it is endometriosis. Thanks again.  Continued good health.

[Keyan]

I am really sorry. I got my first period when I turn 12 and since then the pain started...I would vomit, pain everywhere, upset stomach etc I would go the ER and they would give me demerol and it wouldn't take the pain away...I would have to wait for the pain to go away...it was awful....endo doesn't necessarily shows on MRI or ultrasounds, that's why it is necessary a laparoscopy surgery to be sure what is going on, being so young, maybe the surgery is not an option....it is a hard decision...
what doctors are treating her? to say that endo doesn't cause that much pain, can only come from someone that hasn't suffer from it....it is awful and people manage it different ways....for me the pain didn't stop, I just kind of got used to it, only when I started having pains almost everyday of my cycle, meaning with AF, just after AF was about to stop, a few days later because of Ovulation pain, then the pressure would start and not end until AF would show up with the worst pain....that I looked for help and it took me a few years to get real releif, but I got and although I know it won't last long until it starts growing back, I am happy with having NO pain! for the first time in my life after 12.
I am not saying she has endo, but maybe she does and if she does, although there is no cure, there are treatments to prevent further growth....

sorry so long...I just really feel for you and it brought back memories. I hope you are able to find her the help she needs and if there is anything I can help you with, just let me know.