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Endo, IBS or PID?

I live in the UK where the healthcare system is variable. I haven’t had any joy with a GP as of yet and I can’t afford to go private. I have symptoms of endo, IBS and PID. I can’t work out what I’ve got but I’m living in so much pain and discomfort.

My periods are sometimes okay but often come with really bad cramps. Recently they’ve been lasting longer that 5 days. I’m 30yo with 1 child who is 10. This is really unusual for me. What isn’t unusual, sadly, is the random cramps I have in any given day. I’m so used to it now it’s normal. Also, the bloating. All the bloating that absolutely nothing can take away. I couldn’t stand up straight yesterday. My pain was a solid 9. I looked 6 months pregnant before bed. I’d taken remedies for trapped wind but there was nothing related to digestion that was relieving pain. No amount of going to the loo or passing wind helped. I have kept a food diary and can’t say I ever notice a pattern or have been able to identify trigger foods. The bloating most often happens when I ovulate. Sometimes not though. But I wonder if it’s linked to hormones.

This month I had spotting mid cycle. Never happened before. I took Naproxen and buscopan then had a hot bath. The bloating significantly improved but I’m not sure what helped it so I’ll need to try one or the other next time. The bloating is over my entire tummy. I do feel it high up but it moves about. My doctor did swabs to check for infection. Awaiting results.

Any ideas or advice?

Are you living with BOTH endometriosis and IBS or think you might be?
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  1. Hiya , I’m based in the UK too, so I know what you mean about navigating the healthcare system here. I also have to add that we are not doctors, so we can’t provide you with any medical advice. We speak from our own experiences.

    Since you don’t have a diagnosis, you have two paths worth pursuing. One is asking to be referred to an endometriosis specialist, or simply a gynaecologist that can rule out any cysts or fibroids that could be causing the excessive bleeding. The only way to diagnose the disease is through a laparoscopy. A doctor may recommend doing some imaging tests, which is fine to check on any cysts, but do know that endometriosis adhesions can hide behind other organs, and therefore will not appear in these sorts of procedures.

    The other thing to do is manage your symptoms separately. They may be interconnected, but right now you need some relief.

    I’ve suffered from IBS symptoms for so long, but I haven’t had any doctor link it to my endometriosis, or even diagnose me with IBS. Having said that, I was referred to a dietician, and it did help manage my very painful bloating. I had to make many adjustments to my diet, and I still suffer from occasional bloating, but I now know the triggers and feel so much better. Could your GP refer you to someone to talk about your digestive issues?

    Look up anti-inflammatory diet on our website. Not every change will work on you, but, in my case, going plant-based and avoiding sugar (as much as possible) has been life-altering, for the better. I am attaching some links that could help.

    For really bad period cramps, I use a TENS unit. They are inexpensive, small, and you can buy them either online, or in that healthcare/pharmaceutical shop that rhymes with loops 😉

    I hope you find some answers soon. Do reach out to us, if you have any questions or doubts – Jessie (team member)

    1. , I am so sorry you are having a rough time and have not been able to find proper help or relief 🙁 Like Jessie said, if you can, look for an endometriosis specialist. Not all of them are considered private. If you check out Nancy's Nook- a FB group- she lists specialists that you can search in your specific location. If that does not work, definitely maybe think of looking into another GYNE who can rule out other issues like Jessie stated.

      It is so hard to figure out what may help, without having a formal diagnosis. It wasn't until I knew exactly what was going on, where I was able to figure out better treatments for myself. Diet change is the biggest thing that has been helpful for my bloated. Not always of course. And it definitely is not easy. It takes a lot of trial and error. The smallest of things would end up being things causing me pain and discomfort. (like anything with corn or rice ingredients! I would have never thought).

      I second the TENS unit as well for cramping and pain. And also like a cup of tea and my icepack. I sometimes find the ice more calming than the heating pad!

      Truly hope you are able to find answers and relief soon. Keep on reaching out to us, we are here for you whenever you need too. Hugs <3 -Kimberli (Team Member)

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