Endometriosis UK

Doctors think I’m Crazy? Is this pain relatable?

Straight away doctors diagnose you with IBS. You know your own body and you can feel where it doesn’t feel right. I have a consistent ache in my right hip and groin. It doesn’t go away and can elevate. It also feels like a tugging and the pain can travel to my inner thigh. It feels like it’s around the ovary area. It can sometimes get so bad I have to walk slowly or even lay down!

I’m 29 and I have had issues with my hormones and periods being beyond painful since they started.

Blood tests fine, ultra sound clear..... but I am in pain! And I have been for months.

I go back to the doctor for the hundredth time and tell them I have had enough and she says I could “possibly” have endometriosis and has put me on Regevidon in hopes to shrink it if it is. She said the pain would usually happen around my period but it’s all the time!

Does anyone relate to these symptoms or experience as I feel silly but it’s really getting me down now.

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Sorry to hear your having problems with your doctor. I had to fight for 2 years to get my doctor to refer me, I had 2 ultrasounds which showed nothing and the doctor told me my pain was normal, no pain killers worked only really strong prescribed ones, I even told him that my mum had the same pain he told me it wasnt genetic and just meant I was extra fertile ( I don’t have any children) It’s only when I told him she had endo that he referred me. I had my lap just over 3 weeks ago which confirmed endo which has been removed.

Keep on at your doctor to get referred because there is no way of confirming endo without a laparoscopy and at least then you would have your answers.

Hope you get some answers xx

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That’s what I have found, pain killers barely touch the pain. My mum was diagnosed with Endometriosis only recently and she had suffered for years. They only found it through surgery for something else.

The Doctor has put the Lap op on the table as a last resort, I think it’s just the fear of not finding anything or further complications from the op causing me more issues than I started with.

Thank you for sharing though honestly, makes me feel less like a hypochondriac!

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I’ve had doctors dismiss me for a while and I’m only 21. I was diagnosed with Ibs when I started my period around age 12. I completely understand. All I can say is, you know your body! Keep pushing if you think it is endometriosis.

Also the pain only near the period sounds like BS to me..I have pain all the time.

I completely relate to this. I’m currently dealing with doctors being unsure what’s wrong with me at the moment and I am pretty sure I know what’s wrong and they are FINALLY after 5 trips to the hospital and a gallbladder removal (which needed to be taken out, but this pain is different) listening to me and will take my appendix out and look for more possible endo and adhesions.

It’s a fight till the end! Be proactive with your health. See different doctors if you are not pleased. I’ve seen about 9 different ones over the course of this past month. It takes a lot. But be adamant about your concerns. It’s so hard, but so worth it in the end.

Best of luck to you and feel free to message me anytime you need support x

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It’s so frustrating isn’t it? You know what you can feel!

I had my appendix out at 14 and it makes me think maybe the pain I had all that time ago was endo related!

The doctor has put the Lap Op on the table as the last resort as it comes with complications. Which has scared me abit, but at the same time I’m still undiagnosed.

Thank you for your support! I feel less crazy now.

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Have you actually tried adjusting your life as if you do have IBS, including your diet?

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Of corse, that’s the first thing I did so if the pain persisted I could rule IBS out. My symptoms don’t even match up with IBS is what I was frustrated about.

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I am experiencing the exact same thing, just one step further than you. I have been referred for a lap yesterday (which I am super happy about!) However my consultant seems to have already decided that they won't find anything as my ultrasound scans are normal and told me it was very likely that my pain is caused by bowel problems! And like you, I know my body and my pains and I can tell the way my body hurts comes from a gyne problem and nothing to do with my bowels! I feel nobody is listening to me apart from my boyfriend and family!

Good luck with everything! Xx

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Ultra sounds very rarely show up endo. I had mony ultra sounds including an internal one and they found nothing. It was actually covering all the back of my womb and traveling up the right fallopian tube to the ovary. Millimeters from the bowel. (Hence the IBS symptoms)

Keep pushing for more answers. I had to go private in the end as i was getting nowhere with my gp or the nhs. Even in the private sector i had to find the right consultant who was willing to actually listen to me.

It shouldnt have to be like that.

Keep strong.

Keep asking those questions.

X

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That’s similar to how my Doctor is at the moment, I’m grateful that this one is on what I feel is the right track. But she has suggested that the Lap would be extreme measures to take to find out it may not be that. And has also thrown in that the Lap can come with complications.

So a lot of buzz words to put me off really!

But if this pill I am on does not help along with other changes I will most certainly push for it!

My mum has been super helpful, every single doctor I have had gave me that blank stare.

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They were the same with me about the lap during my 2 last consultations, kept telling me about the risks and how they don't find anything in 70% of women who go for a lap. What they don't understand that we are so desperate for answers that we are more than willing to take that risk!

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Exactly right. So if we decide not to do it, we are essentially living with pain that shouldn’t be there, undiagnosed. I don’t know how that doesn’t sound more concerning to them than going for it!

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You need a better doctor. Ask to be referred to an endometriosis consultant immediately.

Your symptoms are consistent with endometriosis, but it could be anything gynae related. You need a referral and a laparoscopy to confirm diagnosis.

I was in pain all the time. It was considerably worse during ovulation and my period.

You know your body. Don’t let them fob you off. They do it to so many sufferers and it prolongs the pain.

1. Switch to an endo diet to see if that reduces the pain. You’ll need to avoid alcohol, gluten/wheat, dairy, sugar, soy, etc. M&S has amazing gluten-free products, and nut or coconut milks are a good substitution. Genius bread is nice, too.

2. Request strong pain meds

3. Take a good quality fish oil supplement and a multivitamin with minerals. I use Pharma Nord multivitamin and Nordic Naturals Ultimate Omega

4. Get a couple of hot water bottles

5. If you’re able to move, take a gentle walk when you can.

6. Go organic.

7. Visit the various endometriosis support sites on the Internet to familiarise yourself with the condition

8. Reach out on here if you need support.

Good luck! x

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Thank you! This has been really helpful!

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Blood tests don't really show endo, while ultrasounds are only useful if a transvaginal one shows it on the ovaries. Much of the Endo is in places or of a tissues type that are not seen by ultrasound. The best test is a laparoscopy. You need to see a gynaecologist, preferably and Endo specialist. I would talk to/visit the website of 'Endo UK' (link at top of page) who host this site: they may be able to advise on how to get your GP/Dr to send you to the proper medics.

However, even if there is Endo, it is always possible that your pain is gut-related, either because the Endo is on your large intestine / bowel, or because you are having actual gut problems in the ileo-caecal part of the digestive system, that is upsetting any endo-affected part of the gut. Plus, this area can cause great pain in anyone - when no endo is involved.

The ileo-caecal valve is in the lower right part of the abdomen, near the right hip, and it is the valve between the small intestine and the large intestine. It is very prone to malfunction, particularly if we eat things that upset it. I was getting a lot of pain there, this time last year. I was very worried that it was my Endo returning. [NB I'm 62, post-menopause, and have not had endo problems since I had a mirena coil inserted about 8-9 years ago. But, the coil had been removed [post-menopause] a year or so before this pain began, so I thought 'Endo' (or maybe bowel cancer, as my mum had that!). My GP responded well, and I had tests and other checks, including a colonoscopy and an ultrasound to check the ovaries. Everything was clear. However, the embarrassing thing was that the pain went away - completely - when I had to follow the awful, bland, no fruit/grains, roughage etc. diet as part of preparation for the colonoscopy!

Talking to my yoga teacher and osteo, after (who are both safe, trustworthy experts on other physical/nutritional etc. aspects that spin off from their own specialities), they wondered if my pain was ileo-caecal related: maybe caused by my recent breakfast changes, as I had switched to low-fat yoghurt, and this apparently has extra sugar that causes fermentation in the lower gut and upsets the valve. I had also been adding pomegranate to my cereal, and the seeds are also known to cause issues in that area.

So, I would talk to 'Endo UK' and armed with their advice get your Dr to send you to a gynae, but it might also be worth checking if your diet could be upsetting the area, and find out about exercises to ease the ileo-caecal valve.

Hope this helps.

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