Endometriosis UK
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Heeeeeelp! I'm confused and so fatigued! Feeling very alone and unsupported. I have so many more questions than answers at the moment :(

I had a lap in Dec and saw my consultant for the first time after my lap. I feel lost, helpless and confused after this. Some of my symptoms seem worse than before the op. I'm having greater pain around what seems ovary areas, bone ache in thighs and back, still having very bad middle back pain which is apparently referred pain, cystitis like pains (no cystitis though), still very painful when passing stools. I'm soooooo tired still. It's all really getting to me at the moment. The consultant seemed baffled! I was about stage 2-3 endo which was all removed, lots on left ovary and adhesion, small amount on right ovary, lots on back of womb and bowel and some at front of womb. Consultant seemed to think I have less pain because I have less discomfort during sex, but the examination was more painful than the one before my lap. I feel he's trying to palm me off with meds rather than getting to the route of the problem. Going back in two months to see if meds have made a difference. He thinks I've IBS but I think he's just saying this as he has no idea! He given me an anti-spasmodic Meberverine and the other is to reduce bleeding while on period Tranexamic Acid. I don't want to end up on meds that are only treating symptoms and hiding the cause! I want answers to what the cause of symptoms are so I can treat this as naturally as possible rather than pumping my body full of hormones, pain meds, etc. a

Can anyone help me understand or have experience with similar symptoms or meds?

I'm desperate!


1 Reply

Lots going on here.

Firstly you cannot be stage 2-3 endo. The staging of endo is to do with the type of endo, not the location(s) or extent of spread of the disease.

Stages 1 and 2 do not include endometriomas (ovarian cysts), so if you never had an endometrioma then stage 2 is the level you are most likely to be on.

It includes anywhere from 1 to several hundren endo lesions, plus adhesions.

Stages 3 and 4 both include at last 1 endometrioma cyst among the types of endo, with stage4 including deep infiltrating endo which laser or diathermy will not remove.

In the uk though they are more commonly classified as minimal, mild moderate and severe.

Which is more to do with the complexity of surgery needed to treat them than anything else.

minimal and mild are usually removable by most gynae surgeons using laser or diathermy which they are trained for.

Moderate and Severe is where the services of endo specialist surgeons wil be the key to having a decent job done, often involving more than just a gynaecologist, but also colorectal surgeons and urologists too.

Are your symptoms still markedly worse when on a period - or now pretty much every day?

If they are worse at the time of a period, and the visible endo was indeed all removed in the op, then I would advice you push you GP or gynae to check you for Adenomyosis which acts very lik endo but is only found within the uterus muscle walls, and can be spotted with an MRI scan done when you are on a period.

If th symptoms are daily - and include painful bowels then I would tend to agree before you undergo any surgery - you do make a determined effort to identify what foods and what drinks give you worse pain. Keep a comprehensive diary, try the coeliac diet or the endo diet, and cut out foods then re-intoduce them and see if the symtoms do get worse and keep a list of troublesome foods and drinks to avoid in the future.

It is only something you can do experimenting on yourself trial and error.

Lots of us have found certain things we consume make the pains a lot worse, and restrict our diets accordingly.

I am okay with water and soups - but cannot touch fizzy drinks at all, or alcohol, or caffeine.

I also found foods that i am okay to eat and somethings I just daren't go near if I can help it.

Many of us have adopted the endo diet or follow it resonable closely to ease pains and it really is worth trying s if you can find a bland menu of foods that don't make pains worse and stick to them it really can make a huge difference without meds or surgery.

The Meberverine has tiredness as one of its side effects - so if you can reduce the pains by dietary means - then you could come off the drug and see if that helps to improve the fatigue for you - but I warn you that fatigue and endo are so closely linked that even with all endo thoroughly removed the fatigue element can still plague you long after all surgery is complete and you have physically recovered.

Tranexamic Acid is good for adding back blood clotting factors to help periods not to last quite so long, but you may find it more beneficial to actually stop having periods in the first place by taking BC pill packs back to back for 3-4 months at a time then have a period and then start again, reducing the number of periods you have a year to 3 or 4 rather than 12 or more.

Especially useful if you have Adenomyosis and do not yet want a hysterectomy.

Better still is stopping periods completely for up to 5 years with the mirena coil .

If you carry on having regular periods then each one risks spreading new endo through backflow of periods along the fallopian tubes and out in to the tummy. So there is a great deal of sense in reducing this risk, though it is not the only way for endo to spread.

Check out Sciatica too, the sciatic nerve is the one which runs from the spine and down each leg. Anything causing irritation to it, can cause sciatica - which could account for the feeling of referred pain in the thighs.

It is also possible that the gynae surgeon that operated on you didn't realise you had deeper endo, and only treated you with laser or diathermy which just took off the top layers - leaving behind deeper layers of endo which remain there still and again being active each period.

This would be noticeable as cyclical pain -so worse when you're on a period rather than all month.

Definitely try the endo diet and finding safe foods - it could make a huge difference and it isn't quick solution finding the safe foods - but well worth it when you do.

There are a lot of websites with recipe ideas for the endo diet and the coeliac diet which are pretty similar in many ways.

Best of Luck in finding ways to relieve the pains.


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