Endometriosis UK
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Scared and feeling alone

I have been struggling with severe period pains since I was about 15 (before I even had my first period). It was so bad that I would have to take days off school because I was shaking and throwing up because of the pain. At 16 I went on the combined pill which made the pain a lot less but still quiet severe. Now at 20 years old, I still have to spend the first few days before and during my period in bed because I’m in too much pain and too tired to do anything. I went to have an ultrasound and was told everything looked fine except the fact that I have some fluid “where it’s not supposed to be, and that’s concerning”. I have now been referred to a specialist and told I’d probably need a laparoscopy but my appointment isn’t till July.

I think what I’m most afraid of is the fact that I don’t know what’s wrong with me. I’m scared that a specialist will tell me it isn’t endometriosis because then I’ll have no idea what is actually wrong with me.

I’m also suffering from mayor self-doubt. I’m always wondering if I’m just weak and that this pain I have is normal, what if I simply have nothing wrong with me and I’m just a wimp for not being able to handle “normal” period cramps.

I was just wondering if anyone else feels this way as well and how can I know that what I’m feeling is legit, that my pain isn’t normal, that having to stay in bed during my period is justified.

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I totally get that type of thinking too! I think it's actually a social issue that women's reproductive issues aren't properly understood or given attention. We're just expected to grin and bear it and function at our normal levels, even though our womb is turning itself inside out and that's just when it's all going normally!! But the reality is, you do feel pain. It is real. You are not being dramatic (what would you gain out of that?). I bet the reality is that you put a face on half the time and tell people you're 'fine' when it actually feels like something is clawing at your insides? You deserve to live a full and healthy life.

It sucks when you need to wait for answers and sometimes we just don't get a full answer and we need to learn to find a way to live with that. But it is all possible to live a full life even with pain and with a diagnosis of whatever. We don't need to let that define us.

My advice is to try as much as you can to focus on today and not look ahead too much. I've been unwell for 4 years now, going through tests for all sorts and had some really scary moments when waiting for results. But I feel my worrying just made a difficult time even worse. My pain and fatigue was making my life difficult enough, worrying about it all took away even more of my enjoyment of life. I'm not saying it's easy, if course I worry but I try to just bring myself back to right now.

I wish you some relief from it all.

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Thank you so much for this! It’s good to hear from someone else that pain is pain and we shouldn’t have to suffer. You’re also right about the worrying! Sadly, worrying is something I am extremely good at and takes up many minutes of my day. I’m going to try my best and take your advice, just living day by day. I hope you too have found/ will find the relief from the pain, both the physical and the mental pain.

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Hi! I am so glad I found this forum. I have a 14 year old who is having severe umbilical pain during her cycle. We put her on hormones and she is not bleeding anymore but us still having severe pain. Last week I brought her to the ER because she was screaming in pain. She was still in pain after morphine. They did an umtrasound and said they found large a large swollen lymph node in her belly and she most likely had an infection. She had no fever and no high white blood cells though. I told the ob/gyn and she thinks it might be endo in the belly button area that was a blood filled cyst that looked like a lymph node. We are now trying to rule out other causes before deciding on the laparoscopic surgery. I feel terrible for her and not sure what to do. Anyone experience this at her age?

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I’m so sorry you’re suffering. The pain isn’t normal by dint of you becoming bed-ridden during your period. Normal period pain is mild; endo pain is severe.

A scan doesn’t always show endo. My first scan missed mine. You need a laparoscopy which is the only gold standard diagnostic tool for endometriosis.

It’s worth keeping a pain diary so the consultant can see that the pain and periods are related.

I really recommend the endometriosis diet. It worked wonders for me in terms of reducing the pain.

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Thanks for replying!! Sounds like a good plan to keep a pain diary I’ll definitely start doing that! What is the diet? Is there a book or a website that can explain the diet a bit more?

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I use the Flo app to track my periods. You can then see when the pain’s going to hit and can prepare accordingly. It has a section for you to log symptoms, too. I also used iPhone Notes for the consultant so it was all on one page.

You can Google ‘Endometriosis diet’ and all the resources will come up. I think I started via the Endo-Resolved website. It’s basically that you go organic and cut out sugar, dairy, wheat, gluten, alcohol, soy, peanuts, etc. Good substitutes are: Almond milk, coconut milk, oat milk. M&S does the best gluten-free bread and pasta that I’ve found (I don’t think it’s more expensive than the Tesco range). I also take a fish oil supplement (Nordic Naturals Ultimate Omega) - it isn’t cheap but it’s good quality. I also take Pharma Nord Multivitamin with minerals and antioxidants. Chronic disease impacts the immune system so I also recommend a probiotic. Anything that lowers inflammation will help you.

Also, I know it’s not always possible for sufferers, but a gentle walk can help, too.

I hope this helps.

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Hey

I feel your pain. When I was around 20 I suffered from awful period pain which continued for about 9 years. Only last year I decided that this needs to be seriously looked at and now I know I have endometriosis. Laparoscopy actually helped to reduce the pain and now I can function on my first day of the period - before that, I could only sleep all day. It's good that you have your appointment. Ask doctors all the questions and if needed insist on finding the answers, you should not be suffering like that. I always accepted that many doctors said to me that usually, women have painful periods. Doctors should be there to help and search till they find what's wrong. Best of luck!

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