Missed endometriosis and possible PCOS

[Furmummy2x]

So last Feb 2011 I had a lap and nothing was found.

Can endo be missed while on the pill??

Having PCOS symptoms as well but no cysts have ever shown in a scan.

Any suggestions?

[dollydimple]

Hi

I'm afraid I don't know anything about endometriosis, but I have suffered from PCOS for 20 years. You don't have to have visible cysts to be diagnosed with PCOS, it should be diagnosed with blood tests and a 24 hour urine test. Ask to be referred to an endocrinologist. They are who you need to see.

Good luck xx

[PPSN_JudyB Pelvic Pain Support Netwo]

That makes sense regarding the tests.

I also wondered whether you have requested a copy of the laparoscopy report from February 2011 ? This may shed some light on the problem.

[pelvicmessenger]

Endo can and is missed VERY often in Surgery...and yes it comes in a variety of colors and forms...even CLEAR which+ for obvious reasons can be hard to see and missed in surgery.

AND YES any kind of birth control can change the look of the endo.

I have many shows that speak about endo

I would log on and listen to some of the archives

Specifically the ones with Dr. Andrew Cook as the guest , he was on last June and also this past March.

blogtalkradio.com/pelvicmes...

click into on-demand/archives

also there is a lot of info on my website as well

elisabethoas.com/pelvicfreedom

Great advice about the endocrinologist

It sounds like your current Doctor is not able to look outside of the box and really help you.

I would find a Doc who specializes in pelvic pain and does not do OB...docs who deliver babies generally do not have what it takes to handle complex pelvic pain conditions.

[Furmummy2x]

Thank you for the replies ladies!

Seeing a different gynae in July and if he cant help will ask to see an endocrinologist or can I see them both??

The report from the lap said..

'The lap revealed a normal pelvis...'

x

[PPSN_JudyB Pelvic Pain Support Netwo]

I would want to see both: GP's may not want to do two referrals at the same time though in which case you'll have to decide who you want to see first.

When you mention the lap report, is this the letter that went to your GP or the report of the actual surgery by the surgeon ? They are different. I guess you've read the information on the PPSN site ? there is a list of centres but we can help with suggestions depending on where you live.

[Furmummy2x]

Well I've already got a gynae referral in the pipeline (2nd July).

My GP has said theres not much she can do until I've seen gynae.

It was the letter sent to the gp. I've never seen the report.

Yeah I've read the info.

Im in Angus, scotland.

[dknees4 in reply to Furmummy2x]

You might want to see a urogynocologist if the endo doesn't work out.

[Eggcustard]

Hi, endo can be missed. I have just had my third lap during which endo was found and treated. However, when the first two laps were done I was told I didn't have endo. I have no Idea why it wasn't found the first two times but maybe it was because of the pill, I wasn't on the pill the third time. I hope you find the answers you are looking for. if you know there is something wrong then be persistent and don't take no for an answer!

[triisa]

Hi, my endo was missed initially, I believe I have had this condition from my teens.

A blood test CA125 can show when endo is active, although it is not 100% and varies between people. It is worth requesting. Also an MRI can show up endo. I asked how it shows up and was advised that it shows patches of blood.

I believe that being on the pill helped me manage my endo for the first 8 years.

Then within 18months after the birth of my son I had problems, the lap didnt show anything. I was on the pill for the next 7 years, then was advised to stop taking the pill.

I stopped the pill for 7 years, not aware that I had endo. After health problems I had an ultrasound first then a lap. Interestingly when my womb was lifted up during the lap. my endo was discovered. It was well established and I had scarring and adhesions.

Treatment:

Laser was not an option as there was too much endo.

Zoladex treatment for 6 months helped slow down the patches of endo,

Magnesium for migraines, spatone for iron, paracetamol and heat (hot water bottle / heat patches for pain.

Change in diet, dairy, wheat and gluten free to aid digestion and ease pain. Try the change for 4-6 weeks only. To see if it helps you. Then each month prior to your period, change to the set diet, until after your period. I try 4 days prior and keep on free from foods until 4 days after my period. (Seek GP help with diet change to avoid any malnutrition problems that may occur) Gentle exercise and muscle stretches, your GP could refer you for physio.

Always exercise when your muscles are warm, after a bath or try some stretches when warm and relaxed in bed.

Even though it takes time and is not always easy, keep going back to your GP, ask if you can have a monthly appointment. Keep a diary; pain, food, issues, prescription medicines.

Take care, best of luck :o)