Inactive endo?!

[Endo05]

Hi,

I'm new to the group so please bear with me. I was diagnosed with Endo following heavy painful periods and multiple admissions for appendicitis which eventually 7 years ago ended with a laparoscopy and diagnosis of stage 3 Endo right side worse than left. I have managed with pain relief and the pill until last June when I was admitted again for appendicitis and then no answer 11 days later and discharged since then the pain has been considerably worse than the 6 years previous. Eventually in December 2018 they agreed to a laparoscopy which I had 2 weeks ago. Previous Laparoscopy they were able to remove 80%. This time they told me that my Endo is inactive? Having looked online inactive endo is questionable? Also if it wasn't all removed before surely there is some still present. I have tried with the GP but they have told Me the pain is in my head because I will only get Endo pain around my period. I had the coil fitted when I had the laparoscopy and the right had side and the tops of my legs are now painful.

I just wondered if anyone else has had a similar experience of any part? Just looking for some help/advice/reassurance and support.

Thank you so much in advance

[Angel71]

Hi Endo05,

I hope you are recoverying well from your laparoscopy.

I was about to post about inactive endo too. I was diagnosed with severe endo stage 4 eleven years ago and had excision for it. It then came back and as I also had adenomyosis, adhesions, fibroids and polycistic ovaries and the pain became unbearable, I had a full hysterectomy with both ovaries removed five years ago. I have been pain free since but I started having pain again in the last 4 months which has progressively increased. I therefore had an ultrasound scan which showed endo again in 3 parts.So I had laparoscopy a week ago to get it excised. However after the surgery the gynae told me that the good news was that what it appeared as endo on the scan was instead a nodule of scar tissue and that that the other two bits were just white spots so probably 'inactive' or 'old endo' probably left behind from previous op. However as these were not bleeding or causing visible inflammation and were on my bowel and tiny and risky to remove, he has not excised them.The gynae said they are not the reason of my pain, so if the pain continues I probably need to get the inside of my bowel checked.

I am now one week post laparoscopy and still in pain. I too have oaun at the top of my legs, as well as inside my vagina. Not sure if it is also post surgery pain but pain killers are not doung anything. I am due to see the gynae again so I will ask for the images of the op and ask further questions.Would you be able to obtain the images and maybe ask for a second opinion? I have read up too that there isn't such a thing as inactive endo and that even white cells that don't bleed can cause pain.

I am sorry I can't give you more reassurance but I wanted to let you know that you are not alone. I hope someone else on here has some experience of this too.

Take care and best wishes for your recovery x

[Endo05 in reply to Angel71]

Thank you so much for replying it is so reassuring just to know I am not alone. I'm so sorry to hear the journey you have been on!! It's been a tough ride for you!

I had a coil fitted when I had my laparoscopy and so was blaming that for the pain but looking online most people return to normal activities after about 5 days of a laparoscopy especially if nothing is found I'm just over two weeks and can only just about face a small trip and I'm in pain/exhausted.

I am pleased to hear you have a follow up as soon as I was discharged from the surgery I was discharged for gynae they never gave me any info and have no follow ups despite before surgery being told they would come round with images etc so I am slightly disappointed in the care I received so I have booked to see the doctor again next week to try and get a full surgical report and I think like you say I will further follow up the imaging.

I would love more info on this inactive situation because the pain doesn't suggest inactivity it feels like it's having a party.

I wish you all the best with the appointment next week. I'd be Keen to know if you find out anything significant but I hope the find an answer. Also take care and best wishes for your recovery too. X

[Angel71 in reply to Endo05]

Hi,

I am glad it has helped a bit to know you are not alone with this.

I had a coil in the past and it caused me a lot of cramping like pain for quite a while, so it could be that it also contribute to your pain.For me it took a few weeks for it to settle.

As for the recovery time it is really subjective.Each time it has taken me double of the time to recover than what the gynae to recover.I am 10 days post lap and I'm too feeling very tired and spending most of my time in bed.

I am sorry to hear you were discharged with no much info and don't have a follow up appointment.I went private and that's why I had the follow up so quickly, but try to push for more info. I have learnt that whenever I have any scans or procedures done even on NHS I request a copy of the CD and report in case I need a second opinion.

I wish too to have more info on this inactive endo as I am convinced the pain it comes from there.I know my body quite well and it's a very distinctive pain I have only had when I had endo.

Thank you for your wishes and hope your pain settles.I will keep you updated if I find anything else x