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Laparoscopy found no endo, what now? :((12 Posts)
I am new to this site but after browsing 10,000 google pages I found a few threads on here & hoped you ladies can help, share their experience & generally listen to me rant about this hellish time with my messed up body!
Where to start? So I gave birth over a year and a half ago & went to the GP mainly because I am basically now unable to have sex with my partner due to deep pain on intercourse. I waited a year after childbirth to see if that was the cause as had episiotomy and forceps so knew it could take a while. They did the whole pelvic exam - nothing (except pain). STI/Infection check - nothing. Is it in your head? No!!! At a loss was refered to gyne at the hospital. They asked about the sex pains which I explained are deep, agonising & basically its ruining my relationship. Then she went on to ask more questions about my periods & bowel habits etc. I explained I was put on the pill at age 11 due to AGONISING and heavy periods which has continued ever since, even on the pill though it did dull it, I went on the implant after giving birth as had 2 of the most painful heavy periods to date after I keeled over onto the floor several times screaming so the implant has dulled the pain but now I get random periods for weeks at a time they are still pretty painful too & make me feel sick, my bowel movements have always been a bit all over but since I had my little one, with both bowel movements and urination I cant feel anything until I'm literally about to go and have to dash. Plus 9/10 I feel constipated. I also explained I get lower back pain that radiates into my hip esp on the left side (at times its almost like mid labour contraction type pain!) and abdo/pelvic pain generally and even worse during menstruation. She said it sounded liked Endo.
So 3 months later I went for a laparoscopy almost 2 weeks ago now which found no endometriosis, scar tissue or cysts. When she came in saying "Good news!" I burst into tears, I don't think she realised how badly this is affecting my life. I then continued to cry, not sure my partner even knew how to comfort me I was that upset that almost 2 years we still have no answers.
I was told to go back to my GP and get them to refer me to Gastro. I was so out of it after the op combined with being slightly hysterical I wasnt told where they checked, never got told of any follow ups after. I feel a bit lost tbh. After a weeks recovery I hobbled into the Drs to be referred to Gastro, even he wasn't convinced it sounded Gastro but none the less I said I want to look at all options so just do it. Thats due in August.
I am going back to my GP tomorrow as I need another few days to pull myself together, I feel a bit better every day post op but have a telephone based desk job with long hours & atm cant sit upright for longer than half an hour or so before my abdo is killing plus the painkillers they gave me just make me want to vom I'd rather endure the pain! Can barely pick my little one up without it still hurting too so thats getting my down but know I'll be ok shortly. I was also going to have a good vent (like now) about how no one has bothered to do an ultrasound or MRI to rule out fibroids etc.
Has anyone got advice or been through this? The stress its causing me is awful, feel like my body just isnt normal and if I get asked one more time if its in my head I might scream, think my partner might burst soon too haha, but im all honesty its just getting to breaking point.
Was this surgeon a general gynaecologist; with suspected endo you ideally need to see such a specialist with an interest in it. You need to ask them outright what experience they have had in dealing with endometriosis cases. Something has caused this to arise (its certainly not in your head) and I daresay that the surgeon has missed something fundamental here.
Ultrasounds would not have picked up endometriosis if it is there anyway because the endometrical deposits are so small. Endometriosis can also get onto the intestines so these stomach pains may well be due to endometriosis as well.
Fibroids can cause heavy bleeding to arise but would not give you such a degree of ongoing pain; you;ve had problems since onset of menses (like myself and I was eventually diagnosed with endo as well).
I think you need to get a second opinion from another consultant gynae at another hospital; sometimes endometriosis can be missed during lap and it can present in many different and atypical forms.
www.endometriosis-uk.org/ is a good website. You will need to be persistent in order to get answers. Am glad to read that you have a good GP on side.
I would also suggest that you keep a daily pain and symptom diary if you do not already noting all the symptoms. Note pain on a scale from 1-10.
You poor thing. I have had prolapse issues following a forceps delivery so I know about uncomfortable sex and how it makes you feel...waiting for it to start hurting at the next movement, not exactly the most relaxing feeling in the world to say the least and boy is it a mood killer. And you kind of just don't want to go there in any shape or form or talk about it to your other half even after a while.
I suggest going to see a specialist physiotherapist who specialises in women's pelvic floor issues. There may be one attached to your local hospital, you might be able to self-refer...not sure how it works. At least then muscle damage would be ruled out, and she might have some suggestions for you. They might do a brief internal exam, just to test the walls of the vagina for muscle damage or prolapse of any kind, just with a finger not a speculum or anything. Prolapse (where the bladder/bowel/cervix is basically pulled out of position by the pulling at the birth) can result in constipation and weeing issues. The physio might be able to locate the painful area at least, and check for muscle spasm in the pelvic floor. Bear in mind that its possible the heavy or painful period problem may be unrelated to this problem you have now. Good luck with it and keep looking for answers.
Thank you so much for your replies. I had a look on the consent form & discharge letter and then crossed it with the names on the website, apparently my hospital does have a specialist nurse but god knows if she took any part in the surgery all I know is the consultants name was not on that list.
I went to the GP initially thinking hellish birth - prolapses! But I had two Drs dismis any prolapse after an internal but I know some prolapses ie bladder bowel they need to physically go in and look. They saud my cervix is slightly protruding but that wasnt a concern to either of them aswell. So the gyne Dr ruled Endo but said she cant be 100% with me being on the implant. But the Lap said different. I may have been pretty out of it so I'm not sure exactly but I am positive during my tears after the Dr only mentioned my ovaries and uterus? The discharge letter is also vague just saying nothing found in the pelvis area. As they told me to go to Gastro I thought that would at least be in the letter to my GP and even my partner had to back me up as there was nothing!
Today I went back to point out my disturbed sex life plus pain & digestive system could have one cause but they could also be two seperate things! I told the GP thay because of that I'm pretty annoyed no one has sent me for a scan on my whole pelvic & abdominal area. It is affecting urination too so gyne & gastro have nothing to do with that? Finally refered for an ultrasound but its all very frustrating!!
I still think that something (perhaps endometriosis) was fundamentally missed here; the surgeon was probably a "standard gynae" and certainly not someone with a specialist interest in endometriosis. You need to see a proper specialist.
Did they talk to you whilst you were in the recovery room?. If so that deserves a complaint; it is poor practice on the part of the hospital to do that in any event.
If you were initially put on the pill at 11 due to agonising periods then endometriosis is more often than not the root cause. If endometriosis is on your pelvic area and bowels (not unlikely) then an ultrasound scan is simply not going to pick it up.
I would go all out to see if you can see that specialist nurse you wrote on in your first paragraph and be persistent. You will need to be persistent in order to get answers.
It was basically a "Great news" its really hazey but even my partner said he cant remember anything about the bowel being looked at. I was so off it on drugs they gave me I could barely string a sentence together let alone comprehend them. I kept getting asked any questions before & after which I think they should have come for a chat before I was sent home. I spent most of the day there as after the Lap my blood pressure dropped & I was so dizzy they had to keep me on oxygen. Horrible thing too is since Ive got home if I miss a meal (happens all the time at breakfast with my little one normally but feel fine) now I go so dizzy and lightheaded its horrible! Part of me feels worse than before I had the damned op and most symptoms Ive lived with for that long I just get on with it but the one thing I wont let this take control of is the intimacy with my partner! Im also going to get this Implant taken out, it has no use atm as I am in no position to even get pregnant and I have read I shouldnt have had any contraception up to 3 month before the Lap as it affects the results too - another thing I wasnt told. Ive been told of a specialist in Manchester - still far but closer than other places. I will see what happens after Gastro & the ultrasound but not holding my breath on either of them.
If you were actually spoken to about the lap's findings when you were in the recovery room then I would make a complaint to the hospital via their PALS liaison. This is bad practice on the part of the hospital.
I would not hold my breath re ultrasounds and gastro either (with regards to that even your GP was not convinced).
I would see if you can see the specialist you wrote of in Manchester.
I could have written your post, have got nowhere with des as no endo was found on ovaries even though symptoms would point to bladder/bowels, going to loo during period almost makes me pass out in pain). Some days it is agony just to sit down do have to do it really slowly.
As I am not planning on more kids they don't seem fussed so I just live with it and try not to get constipated as that clearly makes things worse, and accept many sexual positions are out.
Friend had similar and fought for referral for second scan where they found tons of endo, no idea how they missed first time?
Its mainly because not all gynaes are trained sufficiently enough in spotting endometriosis in its many and varied forms. Its always better to find a highly skilled gynae with an interest in endometriosis.
Shallot - would urge you to not to put up with this but to be properly investigated by a gynae who knows what they are talking about. Your quality of life day to day is being affected here.
Is there a Endometriosis Specialist Treatment Centre near you?.
Women seeking treatment for their endometriosis should try to find the nearest Endometriosis Specialist Treatment Centre. Look for a Centre of Excellence where there is a multidisciplinary team of specialists on call, who have taken specific training in endometriosis surgery, (laparoscopy and laparotomy, and colorectal surgeon specialists ). These teams should include advanced surgeons who are used to dealing with the management of all types of endometriosis, from deep infiltrative endometriosis (DIE), to removal of large and smal ovarian cysts or endometriomas, and shallow endometriosis, with lots of adhesions.
Attila - The only reason Ive agreed to them is so I can say SEE its not that! Once I can say this I will get referred to the specialist, I think the specialist is more likely to offer an MRI too so when I get referred for a consulation I will say then if they get me in for another Lap it may also be worth getting an MRI before it. Its horrible when you dont want a fuss to be made but its so annoying. This week I am going to make an apt for my Implant to be taken out, itll be agony come the week leading up to my menses and during but i am going to write a pain diary & I am also going go request everything from my Lap - notes, photos and find out where they looked oh and if any biopsies were taken. Do you have any other advice on what to ask for? I recently watched a video that Endo can be microscopic or show as red bumps even tiny little specs as well as a white sheet from seeing the photos when I get my own ill be able to see myself. Thats if they even took photos!
Thatshallot - You poor thing! It is awful really. Going to the loo for me bladder wise it just pops up like omg im gonna wee myself same with the bowels, cant feel anything until I have to go plus dont get the urge to strain. I get no bladder pain but my bowel movements are uncomfortable and painful at times esp cause I constantly feel bloated & constipated (i look 7/8 month pregnant at times), so I normally tear everytime which leaves blood & its really sore after. At times have to use a cotton pad in my vagina and push out my bowel movements which is just not normal. I am only 26 almost 27 and have a 19 month old son, I had a rough labour but by comparison Id rather go through that pain than the after affects Ive suffered which has actually put me off having another baby one day. Not to mention I am now just unable to have sex with my partner. Ive read stories on women who get no answers and they end up splitting up with their partners/husbands because the relationship is so bad. For me even arousal as well as deep penetration is painful which is even worse as we literally can not do anything because I can not enjoy it. You end up feeling like less of a woman and I hate my body right now because of it. Luckily my partner is supportive but I honestly dont know how much longer our relationship can put up with it, I feel terrible for my partner as well as myself. Think the Drs need to realise its two of us putting up with my bodys symptoms not just me.
I would also ask them if any nerves were cut to relieve pain and what they recommend further as treatment options.
I hope you have a MRI scan done (you may have to argue your corner on that one); these are not normally carried out though re endometriosis due to cost.
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