Endometriosis UK

Heavy, painful periods, lower abdominal pain, lower backache, pelvic pain?

Hi, I'm 17 and I am on a waiting list at the moment to see a gynecologist as I have suspected endometriosis.

A lot of people don't take endometriosis serious enough and probably don't even realise that they might have it themselves.

As I'm a teenager my self, I understand girls my age being embarrassed to talk about their periods and how they feel about it. I used to be embarrassed myself.

My mum had endometriosis but luckily got it removed with a total hysterectomy as she didn't have to keep her ovaries anymore as she is 45 and isn't planning on making any more children.

I think people need to understand that a lot of different people have different symptoms.

You, yourself might have endometriosis and not even know about it! It is a very serious disease with stages and no cure.

Some people, like my mum, don't even have a heavy period, but have other symptoms, and others like myself, have heavy, painful periods, ongoing migraine- like headaches, lower back pain etc. etc. (Keep in mind I might not even have endometriosis, I'm on the waiting list to see a gynecologist.)

My aim by writing this blog is to increase awareness in endometriosis and make young women, like myself feel confident enough to talk about their periods. It's a natural process.

Until I first started reading a blog about endometriosis when I found out my mum had it, I didn't even realise my periods were more different than an average person's. As I didn't talk to anyone about it, I thought everyone had the same amount of pain as I did and were just hiding it better. I had to go to the toilet to change my pad during and after every lesson the first couple of days of my period and sometimes, no, scratch that, quite often even had to come home because of the pain I was going through. It took me a while to think to myself what if I'm going through more pain than others, and if my periods are heavier than others. It was always just a thought at the back of mind. But that's all it was. A thought.

The time I really realised something was not quite right was about 6 months ago, I was at school, on my period and everything was fine. I mean yes I had a little discomfort but that was it. It was nothing like what I had experienced later on. Also, I should add, as I was in 5th year, we were getting ready for our final exams and I had a history assignment to do right after school that I just could not miss as it was 25% of our final grade. I was just going over my notes for that and out of nowhere had this unbeleivable pain in my lower abdomen and pelvic. It was so bad that all I could think about was the pain and I had never experienced anything like it before. It was so painful that I found it hard to walk properly and I remember telling myself it's just cramp and it will go away in a few minutes or at least half an hour. It didn't. I took one 200mg ibuprofen and it still didn't go away. I remember sitting in my last class before the assignment thinking of what I could tell my teacher as I thought there was no way I could do that assignment with this pain and I couldn't tell my teacher that I was on my period. That would be too embarrassing, right?

The pain gradually got worse and I started crying in class and just as the lesson was about to end, I still don't know how, (probably the ibuprofen kicking in) just went away. I mean it was still there but 10x less than what it was before and I managed to do my assignment with no problem so that was good (phew!). But ever since then all my periods have been accompanied by the same amount of pain, even worse, if that's possible and just recently I've actually started getting these pains when I'm not even on my period, either right before my period I get this weird pain on my lower abdomen or after my period I still continue getting 'cramps'. At least now I know that they're not cramps. And hopefully you do too.

Please feel free to message me about any of of your experiences or queries (I sound like a doctor. I AM NOT. I'm just a young girl trying to get a point across and hopefully help people in doing so.

I want to try and keep a blog and update it whenever it's necessary for updation.

Thank you for reading and I hope you can be a part of my journey. X Tara

3 Replies

Hi I was dignosed with endometriosis at the age of 27 like yourself I suffered terrible at school with painful periods pelvic pain I was taking ibuprofen paracetamol if it got really bad like it always did i would be sent home from school I had my secound lap when I was 34 and my endo had came back but also had aheadions I'm not ashamed to talk about endometriosis some people don't understand how painful endometriosis is and the impact it can have on us lucky I have a few friends that understand what I'm goin through yes u will get a few ignorant people that have no clue what it like unless they are going through it themselves I hope everything goes well for u and good luck when ur appointment comes through for gynaecology xx

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My daughter is 18 years old. That was my concern after my stage 4 severe endo was diagnosed at age 44 years. I had suffered all my life with heavy periods but unfortunately reacted to any hormones so I couldn't take the contraceptive pill. My daughter always suffered with acne and heavy periods. We decided for her to go on Jasmine contraceptive for her periods and acne at 16 years after my severe endo diagnosis . She didn't have a boyfriend at the time and wasn't sexually active. The Jasmine has helped her skin and regulated her periods. Luckily her blood pressure is okay on it. I used to become severely hypertensive and have migraines so I was banned from the pill. There is possibly a genetic link with endo. My mum always suffered from horrendous periods but was never diagnosed with endo. I was diagnosed until severe stage 4.

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Great post Tara, well done.

I really wish there had been someone like you around when I was a teenager (I'm 60!! ). It is so wonderful, now, that people can start up their own Blogs, and use online websites, such as this 'Endo UK' site, to tell people about their Blog and ask for contributions and questions.

I'm not very savvy about Teenage Blogs, so maybe you could put another shorter post on here asking people to suggest places where you can post your message to catch more younger people and ask them for their questions and comments. You could also ask for suggestions of where you could 'site' your 'Blog' - and for other sites to let people know about it, once it is up and running ... That way you can ensure maximum advertising and reach out to more and more young people who need help and advice, and would appreciate a place of their own to talk and help each other.

As to your own possible 'Endo'. Do you know if the gynaecologist you are going to be seeing is a 'Specialist Endometriosis Gynaecologist' in a Specialist Endo Clinic?? These are BSGE Centres (if you Google you can get a list and find the one nearest to you) and they are centres purely for the treatment of endo. The gynaes that work there are trained in accessing, and recognising/identifying all the different types of endo ... and they are specially surgically skilled in the removal of the endo tissue. Most general gynaes do not know as much about endo, and if it is going to be removed it is better if an 'Endo Specialist' does it.

If your gynae is not in a specialist centre, it's okay to have an investigative laparoscopy - just to confirm, or not, that it is endo - [nb really, only a laparoscopy can properly confirm the presence of Endo]. However, once it comes to the removal of any endo, I think it's best if that is done by an 'Endo Specialist'. NB I believe that laser removal of endo usually just grows back - but can be more and messier - so if they talk of laser removal I would definitely get a second opinion from a BSGE Centre. Maybe phone or email 'Endo UK'. They are the main UK Charity for Endo, and they host this site on 'Health Unlocked': there is a link to them at the top of this page] and talk to them about your consultation.

Well done again, and I hope this helps - and many, many apologies if I'm only telling you stuff you already know.

Take care.

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