Should I go for the lap? Help!

[Ollie1390]

Hi all,

I've been put forward to go for a lap next year as the doctors suspect I could have endo... However I have had ultrasounds which were clear except for a kidney cyst, also had a camera in my bladder which was clear, I've been offered low dose antibiotics to take for the next year but unsure about whether I want to take so many Meds!

I've struggled for years with kidney infections and urine infections, pain when urinating, urinating frequently, horrendous menstrual cramps that feel like contractions, heavy period, pain during sex, bleeding and pain after sex, fatigue, nausea, migraines and most recently feeling dizzy or lightheaded constantly. I feel like I've been constantly ill since 16 (I'm 23 now) and feel like the doctors look at me like I'm making it up, I'm exhausted and frustrated and I'm worried I'm going to go through the trauma of the lap and then it come back clear, yet another way the doctors can make me feel like a hypochondriac!

Do you think I should go through with it?

Thanks!

[Beau83]

Hello

Yes, if I were you I would definitely go for the lap. Your symptoms very much sound like endo and it sounds as though you are suffering. Ultrasounds will not pick up endo 99.9% of the time, most ladies have a clear ultrasound and the only way to diagnose endo is by having a lap. If they find endo, then they can treat it surgically and then with a combination of hormones and pain meds. It could really help you if you get this done.

Of course it is your own body and your own choice but I'd grab the chance for a lap because so many ladies with endo have to fight for many many years to get offered one. Please try not to be afraid- it's best to do this now and see if you have endo while you are young rather than leave it another 10 years and find that you do have it and it's got worse over the years and compromised your fertility. x

[Barders]

hello

Well I think it's completely a personal choice and you need to decide whether it's the right one for you. There are other treatment options for endo so you shouldn't need to have an op if you don't want it. However, I can tell you from my own experience that I had all of the symptoms you describe, except the urinary symptoms. I was actually in agonising pain almost constantly. I had a couple of scans and they showed nothing. But I had the laparoscopy and they discovered and treated endo, mainly between my uterus and bowel. I had my first op in April and I have had dramatically improved pain levels - honestly, I can't tell you how much better it is and I think it was worth it for me. (Unfortunately I also had a ruptured cyst/ectopic preg - docs unsure - a couple of months back and had to have another emergency op, but I am not sure whether that's related or not.) I still have exhaustion, breathlessness on exertion, dizziness, migraines and also muscle pain in my back and legs, but the docs aren't sure these symptoms are endo-related. I had lots of further tests and discovered I had an autoimmune thyroid condition and vit D deficiency. Having more tests for other things too. So it may not be as simple as endo, but it does sound very likely. I totally relate to the feeling of not being listened to, and the huge fear of docs not actually discovering anything, but listen to your body and trust yourself. Keep fighting for a diagnosis. I am sure you will get there.

Laura

[fedup33]

Hi there I agree you should go for the lap. I had 2 ultrasounds at 2 different hospitals which both came back clear but when I had my lap I had endo mostly everywhere and my right ovary had stuck to the inside of my abdomen! I'm glad I decided to go ahead with the lap. Good luck x

[Ollie1390]

Thank you so much ladies, I really appreciate the quick response. After reading them I've decided I should go for it, ill let you know how it goes!

Thanks! Xxx

[hayls]

Hi

I also agree with what the other ladies have said, a clear ultrasound is no indication of whether you have endo or not, unfortunately the only way to diagnose it is a lap. Yes you could start treatment on a "suspected" basis but I wouldn't want to try some of the drug options without knowing for sure that it is definiely endo and some doctors may not be happy to help much if it isn't diagnose in a lap. My experience is similar to others, clear scans but then diagnostic lap found extensive and severe endo - my ovaries were completely upside down and clamped down on my pelvis and bowel, bladder and uterus were stuck together, had huge nodule of deep infiltrating endo etc and none of this showed up on the scans! Some of it can sometimes be seen if the person that does the scan is very very skilled, I had one recently by the head doctor in radiology dept instead of a sonographer and she could see that 1 ovary is back out of place again and most likely stuck to my abdominal wall but its unusual for them to be able to tell this in a scan.

This is worst case scenario though, and fingers crossed you won't have endo but I would really recommend having the lap so that you can hopefully find out what you are dealing with, particularly as you are at a good age to have it, I was 27 when I had my dignostic lap and it could have made a big difference if I had it in my early 20s x

[sj_is_charmed]

I would suggest that you get transferred to a specialist endo clinic for your lap to ensure an accurate diagnosis:

bsge.org.uk/ec-BSGE-accredi...

[wp22]

Yes please go for your lap. It is the only way to help to try and control this monster disease x

[amber505]

I too had a completely clear ultrasound but went for the lap and there was the endo. My problem now is that they didn't find much of it and GP doesn't believe I can still be in this much pain because of that =(

I'd definitely have it done though, it might work for you and at least then you'll have a diagnosis so that people can stop looking at you like you're making it up or just having 'women's troubles'.

[Stephbenj22]

Hi I had all of this goin on for 2 years told my consultant to cut me open and have a look inside as I know my own body an knew something was wrong ( all scans an ultrasounds an mri’s bloods and everything came back fine!) had the lap my liver was attached to my abdominal wall my bowel was attached an my right ovary covered in adhesions pain free after surgery!

[milliem]

hello,

Please have the lap! I had two ultrasounds and none of them showed endo.

Its scary and a big decision to make but if you’ve tried other treatments and nothing else works...it’s definitely worth it.

Have you tried the coil?

Xx