Does anyone know the percentage of women ... - Endometriosis UK

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Does anyone know the percentage of women that have recurring adhesions that grow back after laser surgery to remove them first time?

Anna5 profile image
14 Replies

Hello.

I've just joined this website and have been reading the posts on this forum to find out more about how women cope and what treatments help them. May this year I had a laparoscopy to drain two chocolate cysts on my ovaries. They also found quite alot of adhesions which were sticking one ovary to my uterus and the other to my pelvic wall. I think they freed them up a bit but didn't remove them. I had the choice whether to have hormone treatment, do nothing, or another laparoscopy to laser the adhesions off. I didn't want hormones because of the side effects so I am waiting for a second laparoscopy to remove the adhesions in the hope that it will lessen abdominal and lower back pain . From what I have researched it seems that they often come back again quite quickly within months of the surgery and you could end up with more problems and pain. It would be good to know the percentage of women that have recurring adhesions that grow back after laser surgery to remove them. I really don't know what to do. I don't know whether to go ahead with it and hope for the best or not do it and just concentrate on alternative therapies for pain and management.

I also found out that if your surgeon uses barrier methods between your organs this can reduce adhesion formation after the surgery. Is this a common method that surgeons use now? Or is excision of the adhesions better at reducing them coming back?

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Anna5
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14 Replies
jojo777 profile image
jojo777

Hi

I know that even if the lap is for endo removal or adhesion excision, barrier method is used always to prevent new adhesions. there are many methods gel, liquid etc and it depends on the doctor and hospital what they are going to use. What you need to know is that if a lap is for adhesions then they will remove them and then they will use a barrier method to prevent new ones.

Unfortunately adhesions can be formed after every surgery and the more surgeries the more adhesions. Thats why doctors will avoid a lap for adhesions only again and again.

I dont understand though why they didnt remove your adhesions while you had the endo cysts removed, when I had my lap both endo and adhesion removal took place.

Jo x

Anna5 profile image
Anna5

Hello Jo

Thank you for your message. It's encouraging to know that it is a standard practice to use a barrier method for laparoscopy to remove adhesions and endometriosis. Next week I have an appointment with my gynacologist who is going to do my second laparoscopy. I think I will ask her what kind of method she uses and the risks for adhesions forming afterwards.

I was confused at first why they didn't remove the adhesions during my first laparoscopy. For weeks I thought they had removed it all. They didn't know for sure whether I had endometriosis so consequently I didn't have an endometriosis specialist doing my first surgery and they didn't have enough time to remove it all. So my cysts were just drained. For three months my pain significantly reduced but it has come back now which is very disappointing. So, maybe it's worth taking the risk and going for the laparoscopy. I'm finding it a hard decision to make though.

Did your laparoscopy for endometriosis and adhesion removal reduce your pain and help your symptoms? Have you managed to stay adhesion free?

Anna x

jojo777 profile image
jojo777 in reply toAnna5

Hi Anna

My pain was not reduced but for the simple reason that my then gynae left some endo untreated without saying that to me or explaining why.

I'm now up for a second lap in two days with a new team of doctors to remove the endo spots. First time I had the lap they found some adhesions but they removed them and used some solution but I never had pain from these as they were not too many.

It will be interesting to see how many new adhesions I formed after my first lap in such sort time ( only 5 months)

Jo x

Anna5 profile image
Anna5 in reply tojojo777

Hello Jo

I hope your laparoscopy goes well in two days time and it makes a difference to your pain. Yes, it would be interesting to see if you have formed any new adhesions over 5 months.

Anna x

jojo777 profile image
jojo777 in reply toAnna5

Thank you Anna

I will keep you informed :) x x

I had a lap last august. Lots of my internal organs were stuck by adhesions. I had them removed with endo removal and a cyst removed. I had a lot of complications during the operation which left me critically ill fighting for my life. I needed resuscitation and 6 and a half pints of blood and a second op. After my op I was in agony for 7 months so I had another lap just to diagnose that time by a different surgeon. I was found to have extensive adhesions. My consultant never removed them. He said it is a proved fact that adhesions do not necessarily cause pain and could in fact cause no pain whatsoever. In my case he thought the large bleed I had during my first op had set up an infection and there were puddles of blood still remaining in my pouch of Douglas. I hope the op works for you just be aware it may mot make any difference. Best of luck and fingers crossed! x

Anna5 profile image
Anna5 in reply to

Hello

Thank you for your message. Gosh, it sounds awful what you went through with your laparoscopy. That's interesting that he didn't remove your adhesions and that they don't necessarily cause pain. So, 7 months after your surgery did your pain improve?

Anna x

Its taken about a year for pain to settle since op last aug but I then had lap in march to hinder progress but I have to say hand on heart I am 99.9% better than I've been for years! Had pain for 17 years and fobbed off continually until I was on agony last year! I may get odd twinges from odd day to day but nothing as it was! I can get on with my life! You have to go what you think its right. Its your body and it may be that removal will help. Please let me know how you go on. With best wishes. Xx

Anna5 profile image
Anna5 in reply to

Hello

It's really good to hear that you have improved and you can get on with your life. It's hard to cope with it all when it prevents you from doing things. I've only recently this May found out I have endometriosis but I've had pain and other problems for about 20 years. I was told I had ME/chronic fatigue syndrome and bad periods due to this. I can't believe it has taken so long to find out about my endometriosis!

Yes, it is about what you feel is right. I think I'll know what to do when the time comes. I'll let you know how I get on.

Anna x

in reply toAnna5

I completely agree when you are consummed with Endo its hard to do much, if anything I have been fobbed off lots during my 17 year wait - ovulation pains, pcos, stomach migraines but the far more consistent one its all in head and i'm making it up!!

Yes please keep me updated. Best of luck. x

Anna5 profile image
Anna5 in reply to

Yes, I had the all in my head one early on!

Thank you x

neets profile image
neets

I've had 4 sets of surgery now over 4 yrs, each has helped a little more. Good luck.

Anna5 profile image
Anna5 in reply toneets

Hello

I'm glad to hear that the surgery has helped you. Thank you.

Anna x

omnia profile image
omnia

Hi All, I have just joined the site.

Just to let you know my scenario and hope it well help. Had dermoid cyst of 15 lbs in weight when I was 11 years ol, had laparotomy and right ovary removed plus fallopian tube repair, was very ill and six stone when got out of hospital.

Had a functional cyst diagnosed at age of 30, no surgery just overnight meds in hospital and referral to gynae clinic, cyst disappeared. At 34 years was rushed to hospitla with severe abdominal pain and thought it was cyst. However after a scan and chat with doctor was told he though I had Endometriosis...but needed to diagnose with Laparascopy.So after 2 nights in hospital with meds and a few tests done I got home. After 24 hours received a call from the consultnat to say my CA 125 test readings were highly elevated and I needed to have emergency lap and further tests.

After surgery I was told that adhesions were so bad he could not find my ovary and other organs were affected. Because he was unable to biopsy the one remaining ovary he did a peritoneal cavity washout to diagnose ovarian cancer..Thanfully this was not the case, the high ca125 reading was elevated due to ENDO.

After that lap I was on the Yassmine Pill and I had a 6 year clear gap with very little symptoms ...Now at 42 years and taking no meds I am going for another lap for chocolate cysts/adhesion removal plus gallbladder removal.

I would be interested in hearing from anyone who has had similar connections with Gallbladder problems and in particular anyone who has takern Yasmin, as there is a legal case apparently in USA reference this med causing Gallbladder Diseases.

Hope this helps someone...

Omnia..

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