No endo found during laparoscopy - adhesions

[shellb87]

Hi

I am hoping there is someone out there who is having similar issues to me (obviously dont wish it on anyone) but struggling to make sense of my laparoscopy results. Let me start at the beginning:

For about half a year now I have been struggling with pelvic pain. Sometimes its sharp breath taking twinges but most of the time its period like pain (but worse than my normal pains I used to feel). I feel it in my back as well. Symptoms have been lasting as long as 20 days out of the month and I have been struggling to work as I feel so tired and exhausted from these pains. They are agonising. I also wake in the night sometimes and need to go to the toilet - sometimes when I have urinated I get crippling pain that only goes away after ten mins and when I apply a heat pack. Safe to say I am struggling to cope with the pain and with working whilst in pain.

I had a laparoscopy on friday and no endo was found which puzzled the surgeon as he thought it was endo. He did say he found some adhesions that were similar to someone who would have had a cesarian (I have never had a child nor been pregnant). He did not think these adhesions were the main source of the pain but removed them anyway. The adhesions were located on the uterus down by my bladder. He found no cysts or endo anywhere else. Although I didnt ask where he looked - from the photos he showed it was mainly at my uterus and the ovaries not at surrounding organs or hidden areas.

I was too out of it to ask where he had checked (if he checked the pouch of douglas and other areas endo might hide). Now I just feel confused because I've been in so much pain it cant just be for no reason. I'm really scared the pain is going to come back as well. Its so debilitating.

I'm hoping someone can advise if they have had a similar experience and what I can ask the consultant in the follow up appointment?

Thanks

[Impatient]

Adhesions can start forming from any tummy trauma- even external ones from childhood bumps, gymnastics, etc

Also bursting ovarian cysts can trigger them too. So you certainly do not have to have had surgery or have endo to develop adhesions. They can begin at any age - the longer you have them the more they will have grown and they can in their own right be very troublesome and cause pain.

However -- if endo was not visible to the surgeon but you have a cycle of pains -worse when on your periods then the next potential cause to check for is adenomyosis. very similar to endo, but hidden within the muscle walls of the uterus and unless the uterus shows a lumpy surface to the surgeon it will not be detectable in a lap op.

Have a look on the adeno website and if after recovering from the current surgery pains you are still having problems, then do press your GP and gynae to get you checked for adeno.

adenomyosisadviceassociatio... is the website.

Women tend to have one or the other - some do have both. They are separate conditions. one does not lead to the other.

If you haven't yet been checked for adeno - it is certainly worth investigating.

[Hidden]

Hi there shellby87, I just wanted to let you know that I had a laparoscopy last month and found loads of Endo. I actually have some on my pouch of Douglas (I'd never heard of it before) so I wanted to let you know as presumably they check that in all laparoscopies. I really hope you get to the bottom of it. From my six year experience I have learnt one thing. You know your body, if you have pain there must be a reason for it. Don't give up pushing, make sure they get you a diagnosis. Good luck with it.

[givemeananswer]

Hi Shellb87, I hear where your coming from I don't know your age or situation, have you had ultrasounds to determine if it may be adenomyosis? This was what was found with me, I had the same crippling pain you describe but it was all the time and thought that there may have been bowel involvement. Fortunately I was done having children and opted to have my uterus removed. It took a little bit of time even after that and I occasionally still have problems with cysts on my ovaries but I opted to keep them at that time, I was 39 years old then. I have no regrets it bought me years of relief. Right now I am dealing with sacroilliac joint dysfuntion which I have yet to uncover the mystery of the cause, I believe it's related to either adhesions, my ovarian cysts or possible endo again. Now I'm 50 and am considering that maybe it's time to end this with a bilateral salpingo oophorotomy but it's a double edged sword and not beneficial if I have to go on HRT's.

[shellb87 in reply to givemeananswer]

Hi I'm 27. I have had an external ultrasound before the laparoscopy no cysts or fibroids found. How do they test for adenomyosis? Is that something they would have picked up through ultrasound or laparoscopy?

Thanks to all for your replies. It's very appreciated

[givemeananswer in reply to shellb87]

Hi shellb87, I can only speak for myself and what happened with me because it probably really depends on the expertise of the surgeon and radiologists who treats you. After my third laporoscopy ,two prior in Jan.1997, Oct. 1999 I had some relief but the pain always returned and then with the third in Nov.2002 after lysis of adhesions and laser of endometriosis my pain didn't really improve post surgery. My doctor suggested maybe it's adenomyosis, and sent me for pelvic ultrasound. The ultrasound detected the texture of my uterus was diffusely inhomogenous suggesting the possibility of adenomyosis. So with the pain being more than I could tolerate I went ahead and had the hysterectomy done, August 2003. They send it then for pathology for confirmation. I believe without a biopsy it can't definitely be determined. You would think the possibilty would be determined during laporoscopy and I don't know if they can biopsy a specimen of the uterus for confirmation without removal. Wish I knew more but it's been a very live and learn experience, and I find you really have to be proactive in the search. I hope your collecting all of your post operative reports and pathology reports and ultrasound reports. I have compiled mine like a personal resume because it has infact become my new career since endo robbed me of my real career back in 1997. I haven't worked since. I find everytime I go back i have to start at square one again with the GP's, it's like they never want to take your word that the pain your experiencing is due to Endometriosis. They send you for a barage of xrays and ultrasounds before referring you to a specialist, then you have to wait so long to actual see the gynocologist. This is because i moved provinces.

[unlucky2014]

Can I ask how you felt after lap, and how long you've been told your off work for?

[shellb87 in reply to unlucky2014]

I felt pretty awful for about 4 days in terms of gas pains and struggling to get up from a lying down position but that's normal I think as they have made incisions in the muscles you use to get up . I just got signed off for an additional week so it will be 2 in total if I feel better.

At the moment it's just feeling tired and having a dull pelvic and back ache, accompanied by some sharp pains. I can't tell if that's the pain I had before the op or if it's because of the op. I also attempted a walk today and it was slow going but I'm definitely mending. I also have a urine infection which is apparently common post op. It's not a good idea to push yourself as often you are on a lot of drugs post op and think you are getting better when it's the drug masking some of the pain.

[Lottie80]

Hi shell.... if he thought it was endometriosis he would have checked everywhere. They don't take photos of everything. I want to reassure you that he/she knows what they are doing. They will have more than 20yrs experience to be a consultant.

I hope you can have a better understanding when you have a follow up appt. Honestly though ....do trust these people as they are there to help us x

[LolaLo3]

So sorry to hear this there is nothing worse when you have all the symptoms but when they do the laparoscopy they couldn’t find any... I have jus been diagnosed April 18 with stage 4 endo I was devastated when they told me but I do think it would even worse if they didn’t find any like your situation... I also got a cystoscopy as they thought I ha fit in my bladder turns out it’s the only place I don’t have endo is on my bladder it’s jus everywhere else. 🙄 did u get a copy of your photo’s? Or does your gp have the photo’s? I would defo not leave at this.. like you say it could be hidden.it might be worth asking go to refer you for a cystoscopy. I also have pain after I go to loo for a no 1&2 , there defo has to be something that’s not right defo get a second opinion please don’t leave it.. there are a lot of ladies here when they have a laparoscopy they couldn’t find any endo but when they go for a second opinion they actually do have it. Good luck 😉