14 year old with possible Endo - chronic, consistent pain

[mkesselpdx]

My daughter is 14, This all started back in May she was hospitalized for 4 days with UTI, Kidney infection & possible enteritis after going through lower back pain before her period - severe pain - extreme pain on her right side - nothing showed up on x-rays, ultrasound, ct scan. They were not sure what she had really but had her on 4 different kinds of antibiotics. Month later she started having lower back pain 2 days before her period and then super intense pain on her period and right side pain .. ended up in the ER again- with symptoms subsiding ... same thing in July ... this time the pain has not stopped, it has been contact pain for 2 months ... we have ended up in the ER for her pain multiple times with nothing ever showing on the ultrasounds. We have been to a pediatrics Urologist and they have found nothing and suggested endo ... got to obgyn they put her on birth control ... month later still in pain, since 2 weeks ago she started fainting and has been nauseated. 90% of her time is spent on the couch in pain because tramadol causes her to be constipated. Has anyone else gone through anything like this ... would love some feedback. At this point the obgyn want to keep her on the birth control but I want the laparoscope done. Thank for any advise.

[Lmarie93]

Hi,

I'm sorry that your daughter is going through so much at such a young age. I was the same other than it sounds like her pain was a lot worse than mine.

I didn't get diagnosed with endo until February this year (I'm almost 23 and I've been having endo symotons since I was 13).

Birth control will help to reduce the amount of oestrogen in her body but it won't make the endometriosis go away if she has it.. I'm on the pill to help control my endometriosis but it's never going to go away.

What I have found that has helped my pain so much more over the past couple of months is a major diet change - gluten, wheat, dairy, soy (Especially soy), processed foods free diet and to avoid sugar. I feel so much better in myself where before I was even more exhausted and in so much more pain (never mind always being unwell with something!).

If you and your daughter have any doubts at all, my advice would be to push the doctors to get to the bottom of it. It took me almost ten years of severe period, lower back etc pain complaints for them to finally do a laparoscopy and diagnose me and I'm lucky it wasn't any later because it was getting really bad.

Good luck to you and your daughter and I hope she gets to the bottom of it all soon X

[hannahelizabethmarti]

hello!

wow reading this sounds like it was written about me!

i am 19 and have been having excruciating pain every 26days for a year now. Sometimes it can continue for weeks and I ended up having morphine constantly and i couldn't tell you how many times i went to the hospital.

I've had 2 laperoscopys to look for endometriosis but it was not found, i have another with the top gynaecological surgeon in london next week so i am hoping for some answers then.

they put me into a temporary menopause with injections which stopped my pain and although having menopausal symptoms at 19 was horrible, it was better than being in agony all the time! they put me on HRT to control the symptoms without giving me any information about them so now if i miss a tablet i end up in agony again!

in my experience it is better to pay to see a private consultant because we only had to pay once then they saw me on the nhs, it saved 5 months just waiting for the initial appointment!

please tell your daughter to stay strong, i know it is absolutely awful and that your life is just on hold but you will get there, just don't stop fighting for an answer!

Hannah x

[Hidden]

Hi I'm 17, and I've been suffering from endo since I was 8, I understand how stressful it is to go from doctor to doctor without answers. If the OB/GYN isn't willing to do laproscopy I would ask to be refered to another but unfortunately, sometimes they won't consider lap till she's been on the pill for either 3 or 6 months.

Is she on a progesterone only pill? A combination pill will stop endo production but Progesterone actually 'eats away' at the endo.

Believe it or not endometriosis might actually be causing the constipation, in my case I actually get constipated on every hormonal contraceptive and had diahrria each period.

I can give a few tips to make things easier while she's waiting for a good doctor though (I'm waiting for a speacilist for my 1st lap):

Pain Management:

Pelvic floor Physiotherapy, I cannot stress this enough, I have pelvic floor dyfunction and sometimes it started out with abdominal pain and back pain and then it turns into pelvic pain. If your daughters uncomfortable with seeing one I can give you a list of a few exercises.

Get her referred to a pain management clinic, the very idea of endo is isolating enough but with all this pain she's probably also feeling lonely. At paediatric pain management clinic she'll be able to make friends and will have the support of counsellors, physiotherapists, and pain managers.

Self Paced learning if she isn't in it already- I was missing 3 months a week before just the past few months I wasn't able to stay for even 2 hours without crying.

Painkillers: I take Naproxen and Tylenol, Naproxen doesn't manage my Flareup that results in constipation & bladder issues but Tylenol does.

Anti Inflamatory foods: I'm not going to tell you to eliminate certain food b/c trying to replace them is hard if she's either a picky eater or is allergic to things. But please try to get her to eat ginger (You can get candied), turmeric, and pineapples. There's a lot of other things too.

Constipation: Heating pads that are long, you can make your own out of white rice, add chamomile, lavender, or peppermint and a cotton sock or cotton fabric. Tell her to put 1 on her abdomen and 1 behind her back, it really helps me when I'm constipated. Try prune juice, it tastes gross but 1tablespoon can help a lot. I also use lax a day if it's really bad.

Infection Prevention: I used to only get bladder infections but now I've got issues with yeast infections and once BV. Cotton underwear, stay hydrated, cranberry supplements, sleeping without underwear.

I hope this helps Xx

[Monkey47]

Oh that's so sad to be suffering when so young. I can sympathize a little has my period started when I was 10 and I have had problems ever since. I have had bad acne and then was put on dianette which I was on for 15 years full stop it never really got rid of the pain but has masked so many of my symptoms and problems. I have tried lots of natural remedies in between and some gave temporary relief. I really hope your daughter can get some good treatment and help. At 14 it's hard to imagine that the treatment you receive now can affect your health in years to come. After being on such a strong pill for so long it's likely I'm infertile. I'm 35 now and been trying for nearly a year. I'd never want anyone else to experience this. It's great to make informed decisions and be part of a forum like this where you can bounce ideas off each other. All the best.

[Skelri]

Hi, I'm 24 and have been suffering with the same thing, just on my right side.

Most birth control hasn't worked for me to help with the pain (back to back pills and coils) but my gynaecologist said this week that he wants to try the injection and said that there has been really good feedback from it. Most of the time, it will stop periods and associated symptoms. Perhaps speak to your doctor about that?

Keep pushing your GP and consultants. Endo is still a long way from being researched properly so you need to be persistent and tell them what you want. Do not wait for them to exhaust all minor remedies before suggesting the lap.

Good luck, and hope your daughter gets the help she needs!

[Lucys_Mum]

I read your post and it is so similar to my daughter's experiences. The gynaecologist does not like her taking tramadol so she is taking codeine, but really it just takes the edge off her pain. She has missed so much school, it is stressing her out -which doesn't help matters.

Really hope you have found some answers over the last few months. All the best xx