first lap results

[Lid88]

hi everyone, it’s my first time posting on here. I had my diagnostic laparoscopy today. I was told they found endometriosis scattered in my pelvis (biopsy taken today from pelvic wall), pouch of Douglas, a match stick sized stranding in my ovarian fossa (no idea what that means so if anyone could shed some light I would be grateful) and surprisingly on my diaphragm. They didn’t remove anything as it was clearly to advanced. I was informed before hand they could only remove mild endo. I have been referred to a specialist but I guess I’m just wondering what’s next. What should I expect? Thank you xx

[Tangoandmax]

Hey, the specialist will review previous scans and report from your diagnostic lap to see what needs addressing and list you for a lap with them if you want excision. It’s usually your choice (symptom dependant).

[Lid88 in reply to Tangoandmax]

Hi thank you for replying! I haven’t had any scans at all xx

[Tangoandmax in reply to Lid88]

Interesting, they usually scan pre diagnostic lap. At least you know for certain it’s there. You’re in much better hands with the specialist surgery wise x

[Lid88 in reply to Tangoandmax]

I was originally having an endometrial lining ablation but my consultant said it wouldn’t be beneficial if endo was present as it can make pain worse so it got changed to a diagnostic laparoscopy. Was originally 5th November but I was luckily offered a cancellation last week and I went in today so it’s all happened pretty quickly. Should state though I have been under gynae for many years, been on TXA for 4 years and now at the age of 36 I’ve finally been diagnosed xx

[Tangoandmax in reply to Lid88]

I’m 34 and got my diagnosis in August after eight years of scanning and just utter nonsense. It’s awful it takes so long to get answers/treatment.

Hopefully it won’t take too long for your specialist appointment x

[Lid88 in reply to Tangoandmax]

I’m guessing the wait to see a specialist is absolutely massive? Thank you for your replies xx

[Gaiarover]

stranding is a sign of inflammation near an inflamed structure.

Endo on the diaphram is rare indeed have you had any problems with chest pain or breathing difficulties?

Searching endometriosis of diaphragm will bring up some treatment possibilities and will depend on severity.

Pouch of douglas is the space between the vagina and rectum .

Endo in this area is associated with painful sex and bowel movements.

Was ther mention of inflammation of an ovary , unruptured folicle cyst...

Retrograde menstration is another term to search as endometriosis in the pelvic cavity is likely caused by RM .

Theories of RM vary - I am curious have you had vitamin d checked in any lab work /blood work. I cant remember the exect lab order for this i will have to look at my labs to see how it was ordered . I have had low D pretty consistantly and since my hysterectomy and recovery from sever anemia have been researching the entire vitamin d deficiency landscape as it relates to abnormal menstrual bleeding , autoimmune disorders , immune response and collegen production and heart issues. I can only say they is alot of indication that vitamin d deficiency seems to be a common factor in all of these. I have had very low D as did my mother who had bleeding issues , hysterectomy, and later autoimmune disorders. I seem to be following her footsteps . My grandmother also had HMB and hysterectomy . Both had autoimmune disorders later and atrial Fibrillation issues aortic valve issues .. and im coming to believe that vitamin d is an issue along with mitochondrial issues . Mitochondrial dna is inherited maternally.. vitamin d deficiency could be simply factor if not getting enough or genetic factors effecting absorption ..

Interestingly my son has repeatedly required vitamin D therapy since adolescence as well. Also Interesting is that he is checked nore often for this without asking gor it .. than i or my mither have ever been .. in fact i always have had to request testing .

He says hes tired and they test his vit d levels . I say the same often but that has never triggered vit d testing . ???

I digress ...i hope the info provided provides some information in areas to search and inform yourself of your condition... and prepare to talk with specialist its good to know what treatments are possible and have an understanding of each before your appointment as it can all be alot to take in if everything is new to you. Its hard to know what to ask or understand . I encourage you to search the meaning and idividual terms as well as anatomy of your situation . Its always good to advocate for yourself through getting a handle on the terms and conditions of your diagnoses so that you can understand and ask the right questions. Ask your Drs to explain more also if needed and relate what you have learned etc...to see if you are understanding correctly.

I am notaling any diagnoses of your situation just relaying the info i fpund by searching the terms you gave and relating my own reasearch as it relates to my family - also note my mom, gm and I did nit have endo just heavy mentrual bleeding. My bleeding was caused by unorganized tissue formation in the menstrual tissue . Likely a collagen structure issue it made my endometrial tissue thatcforms each month fragile and the network of capillaries without support they would tear open etc..y worst mentstual cycle i lost 7 pints of blood and nearly died .. my uterus was size of 16 weeks pregnancy .. i decided i had to get supracervical hysto after this . I was so anemic and every time they gave me iron i would have another hemmorage .

So it was different. I do however think so much of these issues are the result of different genetic responses to the same underlying cause.

Good luck . Take care . Do your homework and please do let me kniw if you kniw your D levels for my research thanks . Or anything else odd on your labs . Thank you.

[Lid88 in reply to Gaiarover]

Wow! Thank you so much for taking the time to reply to me. It really means a lot.

In terms of it being on my diaphragm, I would say I get slightly short of breath easily but my main symptom is a dull ache feeling under my ribs and higher abdomen which during my period can be very very uncomfortable and painful. I have been logging it as one of my main symptoms and even yesterday morning told my consultant it was still something that I really struggle with. I never made the connection of it being on my diaphragm, I just thought it was radial pain from my period which is why it came as a massive shock and has frightened me somewhat.

There was no mention of a cyst but he did say there was ‘scarring’ present on my ovaries?

To be fair the consultant said he didn’t feel specialised enough to discuss anything in detail and would be happier referring me to a specialist. So I feel the information I received was basic, just where it was, my discharge notes are quite basic too. So I obviously have a lot of questions but I appreciate his honesty and actually has done the right thing by saying it’s not something he specialises in and it wouldn’t be fair to provide me with information when specialists who know more can.

I do feel genetics play apart, like you, both my mum and grandmother has issues, both leading to a hysterectomy, my grandma had endometriosis, my mum did not.

I’ve not really had blood work, scans etc prior to my lap. I am however exhausted all the time, I’ve had tried many things, including going to see the gp who told me it was my mental health, which by the way it absolutely was not! Could I just ring the gp now, explain my diagnosis and ask for blood work to check my levels?

It’s currently 3.21am and I’m looking into retrograde menstruation and will try to do some research. I can’t sleep, I have so many questions and things going in my mind! Plus I’m a tad uncomfortable and tiny bit scared and completely overwhelmed. I expected them to find nothing and now I have a diagnosis and I’m at the beginning of what is sure to be an absolute mammoth journey.

I will be sure to ring the gp and ask for some blood work and of course I will let you know for your research.

Thank you again x

[JOSANDY40]

Hi,Probably a implant like Zoladex a mth to shut the Estrogen down, calming the inflammation.

It appears your wide spread Endo is similar to mine when first found.

You probably will in the future have a operation to take the pressure and pain off organs which is more specific and specialised.

My best and hugs.