Diagnosis process

[asharrow]

Hello all. I’ve long suspected I have endometriosis as I have always suffered with terrible period pains and often deal with excruciating pains when exercising. This is really hard for me as I’m very into my fitness and find myself being unable to sign up for comps etc due to fear of pain. These just feel like really bad period pains and can last between 5-30 minutes, but often pass quite quickly and all of a sudden I feel normal again!

I have been given blood tests, internal/external ultrasounds and MRI’s and no indications of endo have been picked up. Both my Mum and my Aunty have endo. My GP has said he doesn’t know what it is and it seems he doesn’t want to do any additional investigations but I’m certain something is very wrong, as the pain can be unbearable at times.

My question is, how do I go about getting further testing to determine whether I do have it? And if I do, can it be treated?

I feel very alone and sometimes embarrassed throughout this process as it is an invisible illness and feel no one gets it.

I’d love to hear whether anyone experiences anything similar with pains being almost exclusively when doing intense exercise, and also personal opinions about whether the process of getting a diagnosis is actually worth it.

Thank you ❤️

[Endosufferer1]

Hi! You've good new blood tests that exist and even saliva test (but you need to go private for that and it costs a lot of money). Or directly laparoscopy but make sure to choose the right one (excision surgery and the right surgeon)! You must know that certain types of exercices are forbidden (running, weightlifting...) because it makes things worse for endometriosis. Swimming is OK but not intensive swimming. How do you feel when flying by plane? You need to change your diet (no lactose, no soja, no fried foods...) and that's for life. Take natural remedies like curcumine, noni juice, bentonite clay, etc. How old are you now and when did your periods start? Ah yeah, forget about MRI, it will never show something unless you're nearly dead. 😅 You'll need to stop your periods in taking pills (don't take it for your whole life, after a full surgery, if you follow certain types of treatments, it might not come back but you really need to stick to your diet + natural remedies).

[SavageGold]

Hi there. It's amazing to meet someone else on here who loves sport!Exercise and competitions are a tricky one.

I love exercise. Sometimes intense exercise usually swing hindge exercises like kettle bells and turning over from a sit up to a spartan cause the sudden STOP because the pain is explosive. I'm sure it's adhesions getting ripped.

My previous coach knew my body inside out. He told me to keep him up to date so I didn't accidentally switch on to pills for pain that were banned in competitions as thats the stage I was at. I was good and about to join the ranks for competing in scotland.

running too far on days when it was too hot or something was wrong would give me bleeds and pain for days.

Now I've had my mri it's picked up my uterus is back to front, the top has tipped to point at my intestines and is showing signs of pelvic congestion.

This suddenly makes sense to me because there's pictures of me on a 10k course standing in pain, but actually doing the obstacle throwing myself upside down and hanging took the pain off. I did wonder if I had a prolapse uterus at one time!

I'm convinced this is rectovaginal endo and it explains why specific exercises and even just stretches are impossible. I've said to people completely puzzled for so long 'I don't bend that way!'

I'm switching sports from obstacle course racing to triathlon. Cycling is really good for me. Swimming is sore sometimes but Im figure it out. This disease is not going to destroy my life. I'm also not going to win with it. But I'll live within my abilities now I have a better understanding of what's glued to where. I'm also waiting on a follow up from my scan. I can't have a laparoscopy here where I'm based there's nobody that does rectovaginal endometriosis...

Oh! And I'm seeing a sex therapist start of June to help teach me any adhesion release techniques plus to properly talk out how my body is speaking to me. I know that doesn't make sense but I don't know how to word it lol. We're going to set up a plan with what my body is feeling :tense pain, strain, why I can't bend etc. It's making my life hell. And this woman helped me in December to stop having pain sitting down. And she helped me slow down and work with myself better instead of punishing my poor sore body. She's not an NHS therapist. And she's not just a sex therapist. She's got a bigger range of qualifications than that.

I hope you get something from this! May be let me know what exercise it is you hurt with? How long were you at it? What your coach said? And may be look into other diets. I find my pain is better when I eat loads of red meat, and I eat all the dairy I can get! On my meds my bones are threatening to thin but I have surpassed all my previous Dr's expectations with health just by being sensible. I stay away from alot of carb based foods as they hurt my guts. So I get my calories from high fat foods like bacon and eggs and oily antipasti. I use full fat milk and never buy low fat anything. My bmi is perfect.

[Cailleach]

It does sound as if you are quite likely to have endo due to the level of period pain. I wonder if the specific pain when you are exercising comes from particular areas maybe where you have endo “sticking stuff together” and it is pulling. Does it happen outwith your periods?

Have you actually seen a gynaecologist or has the investigation been through your GP? Have you tried any hormone treatment to see if things improve such as the pill, progesterone or the coil?

If you can afford it it might be worth going private to see a consultant specialising in endometriosis and describing your symptoms, for advice and possible treatment.