4th lap-no endo-don't understand

[Gill1977]

Hello ladies. Hope you're all having one of your better days. I'm just recovering after my 4th very thorough lap showing NO endo which both my consultant and I are utterly shocked at given my symptoms and past. He also performed a hysteroscopy- sample away for testing but he said the lining of my womb looked unworryingly thick. He removed scar tissue from under my c-section scar and appendix scar as they were "getting in the road"

Diagnosed 20years ago with mild endo and had laser treatment roughly 14 years ago. I'm delighted to say I've now got 2 little ones and for that I am truly grateful.

So what the heck is wrong with me? I have very heavy long periods with large clots that I feel fall out of me, horrid ovulation pain (with spotting), pain throughout the month (mainly right sided, down leg, hip, bottom, under ribs), back pain, horrible exhaustion, mix of bowel movements (colonoscopy 2 years ago- clear), loose bowel during period and ovulation- very painful, during period feels like I'm sitting down on a red hot poker! As there's so much blood during my period, I've got no idea whether I'm bleeding from my bottom or not.

Obviously it's a positive outcome that there's no sign of endo- BUT- I still experience all these symptoms! Am I just being pathetic and need to "suck it up"????

Any advice?

Gxxxx

[Lindle]

Hi - was this done in a specialist endo centre by a dedicated endo excision specialist and have you had expert scans (MRI/transvaginal)? Also presumably a thorough internal was done to feel for deep endo?

[Gill1977 in reply to Lindle]

Yes- was done in specialist centre (privately) and with endo specialist. I had transvaginal last year but no mri. Wondering about the possibility of Adenomyosis? I have call with consultant this afternoon. Xx

[Lindle in reply to Gill1977]

Assuming there were no adhesions/fibrosis at all in your pelvis other than by the c section and appendix scars, nothing felt on internal exam and no deep endo on a scan then it could be a possibility. I should ask him to look back at the scan report to see if there was any evidence of adeno and ask whether there was any abnormality to your uterus noted at the lap - bulky, boggy, asymmetrical etc.

[Gill1977 in reply to Lindle]

Thanks Lindle. Totally appreciated. So fed up living like this. Xx

[Lindle in reply to Gill1977]

It must be awful just not knowing - I do hope you get to the bottom of it.

[Mparstoy]

Hi!I am so sorry to hear about your circumstance. Has your doctor thought of the possibility that it is Adenomyosis? I am not an expert, but my doctor said that it is even harder to diagnose, even with a lap. The heavy bleeding, clots and back pain are common to Adeno.

I wish you the best!

[Gill1977 in reply to Mparstoy]

Morning Mparstoy. Thank you so much for responding. My consultant called on wednesday and reiterated how shocked he was not to find endo. We discussed the high possibility of adeno, but he'd like to wait for the results of the womb biopsy (which he'll get early new year if not before). If all is good with sample, he'll then send me for mri (which I understand may be inconclusive in determining adeno.)

I'm only 42- hopefully a good 10 years away from menopause- but I can't go through what I currently experience every month for next 10 years! Xxx

[Mparstoy in reply to Gill1977]

Living with pain is no quality of life at all. I know a little bit about Adeno, but not enough for me to be much help. What I can do is share my experience with you.

Two years ago was the first time I heard about Endo and Adeno. A doctor suspected that I had the two, but he is not a specialist. After 27 years, I finally got a diagnosis in July after my lap. The doctor who operated on me is a world reknown Endo surgeon specialist. I say this because it is fundamental. Most doctors who "treat" Endo do not know what they do not know. Only expert Endo surgeon specialist can help. The doctor had the hypothesis that I had Endo and Adeno. After the surgery he told me he had removed the Endo and that he is almost sure I don't have Adeno. He said that he could not really tell me for sure, that Adeno is difficult to diagnose, if it is in its early stages. It is easier to diagnose in later stages. Adeno is harder to treat, this is why it is called Endo's ugly cousin. What I understood from my doctor is that Adeno can not be removed surgically like Endo. What the doctor does is cut two nerves that connect to the uterus, and this helps with the pain. They also medicate. In worst case scenarios they remove the uterus. Problem with removing the uterus is that it does not necessarily solve the problem, especially if there is Endo and they had not found it.

It is very important that you work with someone that knows the ins and outs of Adeno. Meanwhile, maybe you can try the Endo diet and get rid of any synthetic estrogen from products like creams, shampoo etc. You could also try pelvic floor therapy. The doctor recommended this to a friend with Adeno.

I really hope you get the diagnosis and treatment you need!

I wish you the best!

With kindness

Margarita

[wren01]

You sound exactly the same as me I'm sorry you're in so much pain but its kind of nice to know others out there understand. I'm just in the process of been diagnosed. Scan showed a lot going on so presumed endo in pelvis, bowel etc. Had MRI a few days ago. I'm also dreading they'll find nothing. I've seen spinal consultants, neurologists, been told I had a brain tumour and MS. It was such a relief to talk to a endo specialist who understood my symptoms. I'm praying it is confirmed as well. I hope you get an answer as living with this pain is just awful. Good luck x

[Gill1977 in reply to wren01]

Hi Wren01

Sorry i haven't responded til now. Hope you're having one of your better days. Have you had mri results yet?

G x

[wren01]

Hi. No results yet guess it slows down over Christmas, luckily pain is easing today thanks for asking. I hope you're ok i completely get your pain x

[Gill1977 in reply to wren01]

It's so reassuring that we are not alone- (even though it often feels like that) and that professionals actually believe us. Just need an answer now and a way to help us feel like the women we deserve to be!

Today hasn't been so good, but I'm less than a week from my lap/hysteroscopy (plus I got my period the day after!). I'm still very swollen and tender feeling. (usually a size 6/8 as I work out 10-12 times per week so reasonably fit - so it's driving me a little insane feeling like this!). Plus next to my bruised feeling belly button I have this weird lump- a blood clot apparently and it should dissipate?!?!

Also feels like I have a uti- but i don't. They checked urine today and found traces of blood- to be expected apparently?

Just feeling a little sorry for myself I guess. Can't remember my recovery from my 3rd lap 14 years ago so had no real idea what to expect!

Gx