Endometriosis UK
34,128 members30,517 posts

Could I have endometriosis ?

I've suffered with stomach and bowel issues for at least 4 yrs, and extremely bad periods since I started them age 10. I'm 26 now. I've always had horrible stomach and bowel issues when I'm on. The pain is so bad that I'd stay off school and now off work. It was always put down to I'm young, or not eating properly. And as for my stomach and bowel issues, it's shrugged off as ibs and gastral problems. The last two years, everything's been a lot worse, it's becoming rare that I have a day where I'm not suffering due to diarrhea, constipation, pain, and I always know when I'm due on as my lower stomach is so achy and it is constant pain in my lower back, shoulder and boobs. I'm constantly tired, headaches and dread everyday sitting on my loo! The period pains make me so weak, sleepy and sick, I can't even stand up without feeling light headed. I've recently lost weight, as I'm daily having diarrhea full of undigested foods. When I'm on, my whole stomach and bowel area is so so heavy and sore to touch, feels like my bowel is going to fall out!! My legs ache with every period I get. I get a horrid ache and pain down my left shoulder to elbow which wakes me. Ugh. I'd really really appreciate any advice on if this all sounds like endometriosis? I have an MRI scan next Thursday which I hope has answers! Thankyou x

1 Reply

Sounds like endo- but the MRI may not detect it. An MRI can rule out many other causes though, so it is still worth having.

MRI can pickup endometrioma cysts, and organs that are stuck with adhesions in the wrong location or constricted by scarring and adhesions.

Endo for the most part is a surface growing disease, it spreads like blood blister rash over the surfaces of ligaments, organs and tissue and acts just like the cells inside the uterus, by having its own period each month. it doesn't know it is not inside the womb and it responds to hormones in exactly the same way as it would if it was inside the womb. It is almost impossible to spot in an MRI or ultrasound scan, and even if there are clues it certainly doesn't indicate the extent of the disease or the damage it can cause inside. Only a laparoscopy can give the surgeon the full picture of what it is doing inside.

These bleeds have no escape route and the blood irritates whatever it lands on causing inflamation and pain, which in turn becomes a wound which heals with scarring tht can develop in to an adhesion as a form of protection against future injury on the same location. These adhesions are very sticky as the name suggests and don't stop growing, they get to the point where ther can glue organs together that are normally free to stretch and move about. They are superglue strong and stop the tubes expanding if they grow around them, like the bowel, ureters, ovaries etc. Any organs that need flexibility can get frozen in place with adhesions from endo (and also from surgery), but surgery is the only way to cut them right bck and free up the organs and also the only way to remove existing endo lesions wherever they are found in the body.

Endo can grow anywhere, and if it is growing on the diaphragm this can refer pain to be felt in the shoulder rather than on the diaphragm.

Having said all of that, it is quite possible that somethings are causing IBS and gut gas problems can also cause shoulder pains, and certainly can make period cramps more painful too without there being any endo problems at all.

You clearly do have some form of IBS - and IBS is not diagnosis, it is the reaction of the gut being irritated by something(s) your are eating, drinking or an illness of the digestive tract itself which may or may not be endo.

After surgery there are two elements to long term care.

The first is stopping your periods if that is the time the pains are much worse.

Mirena coil is the best of the bunch in terms of long lasting and least amount of faffing about.

It is best inserted during a laparoscopy and you should seriously take the opportunity to get it installed when you get to have a surgery, regardless of the outcome of the op.

It takes 4-6months to stop periods after it is put in but should last up to 5 years with no periods, no monthly cramps, no PMT, no tablets to take and it is only 20%of the strength of birth control pills.

The Skyla is a smaller version and only lasts 3 years before needing replacing - but if you are making the most of the chance to get it installed while you are under general anaesthetic then go for mirena.

In the event you meet a partner and want to start a family it can always be removed, but the change to the quality of your life by not having monthly hell is priceless once it does get to work.

Arm implants last 3 years. Neither the coils or arm implants will be affected by the runny tummy problems, but the other options which are all tablets will probably fail to stay in the body long enough to be effective if you are racing to the loo a lot.

The 2nd long term way to battle this is with very careful food/pain diary.

Watching everything you eat AND drink to identify the foods that make your situation worse.

There are foods which are much better for your gut and soak up excess fluids, just s there are natural laxative foods if you do get bunged up a lot.

Pain killers will tend to cause constipation in most patients.

You can google endo diet and find the types of foods to avoid which are known to be a problem for endo by encouraging the production of oestrogen which you want to avoid.

The Coeliac diet too will have a list of foods that people are less likely to suffer from a reaction to eating.

We re all different in what we can tolerate to eat.

In my case - after much experience and pain- I live on water and soup for drinks.

Zero fizzy pop, no caffeine, no alcohol, no diary drinks (unless I need to flush out or top up good bacteria after antibiotics).

I do eat gluten in small amounts, but don't touch red meats, and only eat a handful of assorted vegetables and don't touch citrus fruits, but tomatoes, bananas seem to be okay in my body.

I do eat eggs and seem to tolerate them okay.

But I tend to have a constipation issue rather than the diarrhoea issue. so you do need to do a lot of meal experiments to find what works for your body and stick with your reduced menu options of safe foods or pay the consequences.

We all fall off the wagon from time to time and scoff something we know we shouldn't or take a sip of alcohol to toast a bride and groom at a wedding etc. But when you get that reminder afterwards and sometimes very soon afterwards that your body doesn't like it, you will quickly revert back to the safe options again.

Keep a record of what you are eating and the reaction to it. You don't necessarily have to follow any set published diet, it is a case of finding what does and doesn't work for you as an individual.

The endo diet is geared to reducing oestrogen levels and pain, but it is flexible.

If there is a food item then is not endo friendly - but actually it is a safe food for your gut in terms of not causing pain,gas , cramps and loose bowel movements then keep it in your diet.

And what works for one person may not work for the next, so it is a very individual journey of discovery for each of us. It can take years of trial and error at meal times to find what best suits you, don't expect this to be something you figure out in weeks or even months.

If you still have your gall bladder producing bile, then eating fatty foods triggers the production and supply of bile to break down the fats - this adds to the liquidy content of the bowel, so avoiding fats will be of benefit to the consistence of the poop.

The whole battle of endo or indeed any illness is to find ways to be as comfy as possible, whether that's loo trips, pain control, period stoppers, surgery, diet whatever it takes to improve your quality of life.

Surgeons can operate. GPs can prescribe pain meds and antibiotics etc,

but your best doctor is yourself. Fighting for diagnosis and treatments, and never giving up the battle to get a more comfy life. Trying to find safe foods and drinks that suit you, getting the right balance of hormones to control periods with the least amount of side effects is trial and error too. So many options that if one doesn't work for you then try something else.

Hope your get a diagnosis soon and can get the treatments to alleviate the symptoms.


You may also like...