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Home » Contact us » Personal Stories » Hayley, Project Co-ordinator, Endo Sufferer, Mum

Hayley, Project Co-ordinator, Endo Sufferer, Mum

Hi everyone!

I am Hayley 39 and I am mum with a teen who has very highly suspected Endometriosis


I am extremely lucky to be a mum I am very aware of that one.Having a 15 year girl ( nearly 16) who started to show some signs of endometriosis around age 14 this has not easy to write about
But as a endometriosis fighter myself this is what I doEndo support United along many are fighting to build more awareness for teens and young adults in the hopes that others will get a quicker digonisis and better treatment. 
I do have Endometriosis myself and have hopes that our future generations will get better treatment then most of us ever did.My daughter has only just been put under a consultant at a endometriosis clinic and they are treating her for endometriosis on her symptoms. If this treatment plan doesn't work they won't have a choice but to do a lapersocpy. I would really like to think that even if I didnt have endometriosis myself I would have still looked for answears and sought out the support groups, web pages etc to try and find out what could be the cause and how to be supportive.
So Endometriosis can cause different symptoms. And in Some teens and young adults they may have one or more of the following symptoms which they can look out for. 
Severe period crampsheavy bleedingChronic pelvic painPainful urination (pain when peeing)Diarrhea or constipation (loose or less bowel movements)Pelvic pain with exercisePain after a pelvic examPain with intercourse (if sexually active)
Also The amount of endometriosis doesn’t always compare to the amount of pain they may have. For example: Some may have a lot of endometriosis and have very little pain, while others who have a small amount of endometriosis have severe pain.
How is endometriosis diagnosed?To diagnosis endometriosis for sure is to have a procedure called a laparoscopy.
This procedure allows a doctor to look inside the pelvic cavity with a special lens to check for endometriosis (implants). Other tests that are often ordered before a laparoscopy may include blood tests, vaginal cultures (to check for infection), an ultrasound and/or an MRI. These tests are usually done to “rule out” other possible causes of pelvic pain.
What causes endometriosis?Although we know that some may be a little more likely to develop endometriosis because one or more of their female relatives have it, most of the time it is not know what is the cause though.
How can you as a parent be helpful?It’s important to have a clear understanding of endometriosis; the symptoms, treatment, the possible side effects of each medicine, and how the disease impacts there life.Let them know that you want to help and being supportive will make a huge difference in the way that they cope with the disease.You can be supportive by learning about the disease, being a good listener, and showing them that you care.
Here are some examples of how you can show support:
Speak to there school / college make them aware of the condtion, if having time off school/college arrange for work to be sent to them. 
Bring the social event to your house:If they were planning a get together with mutual friends and there not up to going out (because of pain), let them know its ok to cancel plans, even suggest getting them have people around your home if they feel upto it. 
Learn there signs when they are pain Figure out a way they can communicate when is in pain. Having someone who understands there pain threshold will likely give them confidence to talk openly about it more. 
Learn What else you need to know about endometriosis?Teens and young adults CAN suffer from symptoms of endometriosis.
Endometriosis is NOT an STI sexually transmitted infection).
Chronic pelvic pain is NOT normal.Most young adults have none or mild menstrual cramps one or two days a month. If they are absent from school/college or work a lot because of pelvic pain and/or menstrual cramps, or has pain in there lower abdomen (belly) that isn’t relieved with over-the-counter pain medicine, tell them to make an appointment with there Gp which is the first point of call
Endometriosis occurs among young and older people. 
This is not something I ever wanted to pass down to my daughter so far the best thing I can do is not compare her to me and reasure her that not everything that has happened to me is going to happen to her .
Watching your child deal with pain (from endometriosis) and the possible side effects of treatment can be very hard especially if you feel you can’t do anything to make them feel better.However Remembering, your role as a parent is very important, as you can be of great support and comfort to them.


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