Advice Post Surgery..

[Immyp14]

Hi Everyone,

I’ve just recently had laproscopy and hysteroctomy surgery following numerous gynaecology appointments including internal and external ultrasounds (which were all clear) My consultant suspected endometriosis.

Since I was 14, I have been having extremely painful heavy periods, with consistent 50p pence clots, bloating prior to period, pain going to urinate, pass stools in my lower abdominal region. I feel fatigue a lot of the time weeks before I am due on, despite being trialed on numerous pills - I experience sharp, burning pains in my back and lower/pelvic area, resulting some days not being able to go to work or college.

Following my surgery, the surgeon (who was not my original consultant) did not find anything at all- all normal, healthy organs.

Feel like I’ve been left with no answers, any advice on what to do? Any suggestions on what could be the cause as I thought all my symptoms lead endometriosis…

Many thanks,

[Arty09]

All your symptoms are classic endometriosis. Was the surgeon an endometriosis specialist? If not they don’t always have the expertise to spot endometriosis in all its forms (it has many different appearances). I had a laparoscopy many years with a general gynaecologist who found no endo, symptoms continued for years, I thought I must be mad, eventually went to a specialist who found it in many areas. I was not aware that this happens a lot. Endometriosis really needs to be it’s own speciality within gynaecology. I’d recommend joining Nancy’s nook on Facebook for lots of information.

Secondly did they test your uterus for adenomyosis post hysterectomy? Even if you don’t have endo you have a lot of symptoms of adenomyosis so maybe you had that? They have to test uterine tissue in a lab to confirm but it could’ve been spotted on mri or ultrasound.

I’m sorry you have had to go through this at such a young age, keep pushing for answers as it outrageous that they have removed your uterus and now saying everything was fine! Have you found relief since the hysterectomy?You have been suffering for a reason and deserve to know what’s really going on with your body. You have a right to ask for your surgical reports and records as well.

Take care and hope you get some answers xx

[Immyp14 in reply to Arty09]

Hi, Thank you so much for you’re reply! She was not a specialist just another consultant in the hospital.

I has a hysteroscopy which is a procedure used to examine the inside of the womb- not a full removal of my uterus.

This was to look for adenomyosis - but due to them saying it looked “normal” they didn’t take any biopsy samples at all!

I will definitely look into that Facebook page, just feel like I came out of surgery and been left in the dark with no answers and the same symptoms.

Thank you again xxx

[Arty09 in reply to Immyp14]

Ah sorry I didn’t realise it was a hysteroscopy! As adenomyosis is growing in through the muscle wall of the uterus mine was seen on mri and at laparoscopy noted that uterus looked “bulky”. I understand how you feel as I felt totally lost after my 1st lap. It’s horrible going through that procedure and coming out with no answers! If you continue to suffer I would keep pushing to see a specialist. Wishing you the best of luck xx

[Thecraftyadder]

I'm so sorry, I to was told everything was normal after a lap in my 20's (had symptoms since teens) but symptoms continued and eventually years later I went privately to see an endometriosis specialist who found deep endo in my ligaments. If you can afford a private appointment it could be useful. I googled the surgeons working at the nearest endometriosis centre to my parents, then looked them up to find their private practice. It was so useful to talk through with someone who really knows their stuff on it and doesn't just dismiss you. There's no obligation to have further private treatment, though I did end up doing so as was kindly given help by my family.

[Immyp14 in reply to Thecraftyadder]

Hi, Apologies if it’s insensitive to ask… did it take long for them to diagnose after having your lap?

I was told by one consultant due to my age there was a 30% chance they wouldn’t find anything on my surgery.

Did you continue to go to your GP with your symptoms or just go straight to private.. did you have anything in between MRI, other blood tests etc.

Many thanks and kind regards xxxx

[Thecraftyadder in reply to Immyp14]

Between by first and second lap there was nearly 9 years. I didn't know about endometriosis so I got brushed aside with the IBS label for years. I moved out of the UK but was getting repeated episodes of vomiting due to pain. Multiple a+e trips and was admitted with suspected appendicitis. Because each time ultrasounds and bloods showed nothing I was always told it was an ovarian cyst rupture and discharged. I researched about endo, watched some videos on YouTube and realised I might have it so set out to find someone to advise me. My GP where I am now is really kind but despite all her efforts she couldn't get anyone to listen to her either!The guy who diagnosed me in the UK said it was probably missed on the earlier surgery but also said it's harder to spot when you are younger as it starts off microscopic. I didn't have any on my ovaries or womb then so I assume they just didn't look very far at the first surgery.

Now it does show on an ultrasound as I have more advanced disease and an endometrioma at present. It took about 18years from first going to the GP about the pain to finally getting diagnosed. Way, way too long!! I hate to think of other people going through that like I did

[Immyp14 in reply to Thecraftyadder]

Thank you so much for your reply! My ultrasound was normal, they keep suggesting other causes of pain: another organ in that area etc!

I will just have to keep on my GP until I can afford a private consultation!

Did you’re endometriosis specialist say why it’s so microscopic at that age, suppose that’s why it’s missed when you’re young! I guess the older you get the more it grows and becomes more noticeable!

I am so so sorry that it took so long for you’re diagnosis, I wish you the best with everything and hope you’re able to manage your symptoms better now xx

[Thecraftyadder in reply to Immyp14]

Thank you. I don't think he said any more but it was a lot of information to take in. I remember he said the amount doesn't equal symptoms because even minimal endo could give you very bad pain.Mine has come back big time so I'm try yet another hormone pill to buy myself time. My ovary and womb are stuck together now and I'm waiting to see a pain management specialist.

Thinking about it, I did have a lot of bowel investigations so you might have to have those and a CT scan to rule out anything else. Definitely discuss next steps with your GP. All the best with getting a diagnosis xx