Endo in lungs, on bowel and bladder - Endometriosis UK

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Endo in lungs, on bowel and bladder

ERB1
ERB1

Hi everybody,

I was wondering if somebody could shed some light on my current situation. Endometriosis was suspected at the beginning of 2018 due to having lung bleeds that coincided with every second day of my period.

I was referred to gynae and they started me on the pill to see if they stopped the lung bleeds. They did. Following on from that, I started to get pain during sex and intermittent bleeding.

I have always had heavy flow and extremely painful periods but thought that was the ‘norm’.

I’ve also had on going bowel problems and been diagnosed with ibs which isn’t easily managed.

I had my first laparoscopy yesterday and they found endo tissue formation on the bladder and behind/around the bowel but nothing in the pelvis. Is this normal?

I feel completely baffled by this condition and find it hard to understand how I haven’t really had any major gynae symptoms compared to other people!

6 Replies
oldestnewest

Hi ERB1,

You are not the only one to have tests done and nothing shows up. Sometimes endo hides behind other organs and is difficult to see once the surgeon goes inside. They can only see what they can and easy miss some endo.

I had endo inside my bowels and bladder, I have IBS and celiac disease, I still have bowel issues and can't eat a lot of solid foods so I have to go on a liquid diet for a while. Endo can travel anywhere in the body, even ribs, lungs.

Some women don't have much or any pains with endo, then they are women like me who are in constant agony. Everyone is different. Keep a diary of your pains, symptoms what you feel inside. It also depends on how aggressive the endo is.

Sweety

ERB1
ERB1 in reply to Sweetyassi

Hi Sweety,

Thank you for your reply. I’m sorry to hear you have so much pain, I hope you manage to get it under control soon.

Thanks for all the information, I’m so new to this condition - I am struggling to grasp it. Time, patience and research I guess will be the way forward from now :)

Sweetyassi
Sweetyassi in reply to ERB1

Hi ERB1,

No problem. I've been dealing with endo for 11 years and I'm still doing research and finding out different things. Just remember stress makes the pain so much worse. Ask anything you need to we are all here for each other.

Sweety

A laparoscopy is looking at everything that is 'inside' the area of the lower torso, which is what we think of as the pelvis and abdomen. That they found endo on the bladder, plus on, and behind/around, the bowel is typical of where endo is often found - and this is all in the pelvis area.

If endo was not found on the actual walls of the pelvis, that doesn't make the findings any less significant. The important thing, is that they 'have' found endo in the areas where it often causes a great deal of pain and problems for women.

Hopefully, now you will see a more senior gynae - maybe a specialist Endo gynaecologist - who will remove the Endo on the bowel etc, and who may well find more endo (even of different types - there are different forms of endo) and may also find and remove more endo in hard-to-access places.

There may well be more that they have missed, but endo can be hard to spot, and a lot of the general gynaes who do initial laparoscopies are not always skilled in finding and identifying all the different types of endo tissue, in the more 'hard to access' areas.

The surgeon should have graded the type of endo/where it was found, and with endo on the bowel I would expect you to be referred to a BGSe centre - a specialist Endo Centre - with a more expert endo surgeon.

I don't know if the endo on the lungs can be assessed easily. Normally, endo is contained in the pelvic area, with the heart and lungs closed off from the are by the diaphragm. However, I have hears others talk about this before, and if it is suspected in you (along with the endo findings they already have) then I really would expect you to be referred to a specialist endo clinic.

I hope this helps. Meanwhile, I would do all the reading and learning about 'endo' that you possibly can, as increasingly (eg current economic climate) we women are having to fight more than ever to be heard on issues like endo. Read about it on here, talk to the Endo advisors at 'Endometriosis UK' who host this site (see links above right), and see if there is an 'Endo Support Group' in you area. I live in Devon and we have them in Totnes and Plymouth. Sadly, we have to become our own best experts, so please keep researching, but on good, up-to-date, accurate sites.

Take care.

ERB1
ERB1 in reply to GrittyReads

Thanks for your informative reply. I am under a senior consultant endo gynae specialist and he did the surgery on Friday, he removed all the endo tissue including around the bowel and bladder as well as the ovaries. He removed everything he found.

I was just baffled to as why I wasn’t massively symptomatic considering it was in quite a few places.

I’m not sure how or if they can remove it from the lung, that will be my next question for him.

Thanks again! Take care :)

GrittyReads
GrittyReads in reply to ERB1

Hi,

So great to hear that you are with a really good endo gynae, who knows his stuff.

It is scandalous that so many women are seen by general gynaes, who can do things such as remove endo - in areas they probably shouldn't be trying to deal with - and without explaining that an explorative lap can be done first - without removal - to see if they need more specialist treatment.

As to your Endo not seeming so bad given what was found… that seems to be one of the areas of this weird condition that is baffling. Sometimes it is when poor removals have already been done, but often it seems to come down to individual women, pain thresholds, hormone levels etc. plus so much more that is not - as yet - understood.

What is worrying is that very bad endo seems to be on the increase, so it could be linked to diets, toxins in the environment or other as yet unknown reasons.

However, I am so glad that all seems good, and I hope it stays that way for you.

Take care.

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