Recently diagnosed, needing advice!

Hi am am 21 years old and was diagnosed with endometriosis 3 months ago after an laparoscopy. My surgeon found adhesions to my bowel and appendix, endometriosis and poly cystic overies. I have suffered from heavy and painful periods for years and have severe pain when having intercourse. I haven't had intercourse in over a year! After my op I was put on Yasmin combined oral pill and told to take continuously. Since taking this pill and since my op I am still not able to have intercourse and am still getting severe pain everyday! I am going back to my doctor as I have not been able to hold my urine and it gets painful if I hold it too long and also have had a change in my discharge! I was just wondering how many of you still have pain and how long after your op was you experiencing any changes! Really appreciate advice as it is effecting everything in my day to day life! Thanks x

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  • Hi :) sounds like a pretty though time at the minute, going back to your doctor sounds like a good idea though! I'm afraid I don't really have any good advise, but I just wanted to let you know you're not alone! Since my lap I still have really bad pain, and have also had problems holding my bladder and pain if I hold on too long. I am due another scan and then probably lap. I guess outcomes are different for everyone, and there could be a number of reasons why things haven't improved for you just yet. You're still relatively new post op, maybe you're body is still adjusting to the homones etc?

    Just wanted to let you know I'm thinking of you and totally get where you're coming from! I hope your doctor is helpful mad you get some answers soon xxx

  • Several different things going on here.

    Firstly surgery very rarely makes much impact on sex pain. It wouldn't make the pain worse but it isn't likely to make it better. The two main reasons for endo ladies to experience sex pain and adhesions and ...adhesions.

    The first sort stick the uterus and cervix out of alignment and holds them there, the uterus is meant to have some flexibility of movement, and adhesions can alter the angle of the cervix by sticking the uterus in the retroverted position.

    the following illustration (without the presence of any endo) illustrated how dramatically different the two positions are

    You can clearly see the pocket or pouch of douglas (POD) between the uterus and bowel in the left hand picture and if endo gets down there which it usually does as bleeding falls to the lowest area with gravity and there is no escape, the irritation caused by that blood causes adhesions to grow from which ever irritated sides of the POD and it doesn't take long for the uterus which is normally floppable back and forth to get stuck tilted backwards.

    here's a pic of what the long adhesions look like - the filmy strands stretching between bowel and uterus - they do not have much stretchability at all, they are very tough and would need cutting through in a surgery.

    So that is one kind of event leading to sex pain, which can sometime be resolved by surgery to cut the adhesions which frees the uterus and cervix to be more flexible again ...for a while.

    The other is caused also by adhesions but in a different way. Any irritation or trauma or surgery of tissue can cause an adhesion to grow automatically as a cushion of protection against future damage there. So they are normally useful to the body, only trouble is they don't know that there is a time to stop growing. so they carry on growing.

    they can stretch over the outside surface of tubes like the bowel, the vagina, the cervix, the ureters as they grow forming in effect a corset of superglue strands constricting the tube from being expanded.

    This can happen on the outside surface or tubes and on the inside surface of tubes or both.

    If these tubes are coated with adhesion strands then any attempt to stretch the tube, whether that is a speculum, or having sex, or in the bowels case a passing of a poop, the tube which normally would have some flexibility no longer does and yet in order to stretch or being forced to stretch causes strain on the adhesion strands to the point where they can tear at the weakest point and that is usually where the adhesion is attached to you, ripping a wound which hurts you and every wound then needs time to heal and it will scar and more adhesions can grow as a result.

    Another cause of the adhesions in the case of the cervix is heavy bleeding periods , the constant blood passing over through the cervix channel irritates the inner surface of the cervical tube leading to what is called cervical erosion which is soreness to the cervix and that can spread in to the vaginal area around the opening of the cervix. Another cause of sex pain.

    Here's a website with some diagrams on the tiny but not insignificant surface strands of adhesions;

    And as if stretching and tearing of adhesions alone wasn't enough of a problem, the older the adhesions the more they grow their own nerve fibres and blood supply to keep growing, once you have the adhesions and they try and get stretched in sports or straining on the loo, or other physical exertions those adhesions themselves can be a source of pain. So someone with adhesions who undertakes a physical exertion of some sort can expect their nerve fibre in adhesions to send ouch signals to the brain.

    This is why sadly - surgery to remove endo while on the one hand will be of great benefit, and cutting though adhesions can free up organs to be more flexible again, and putting in buffers or barriers between organs for the adhesions to grow and stick too, rather than sticking organs on to neighbouring organs again all help it is never a complete solution to the problems of sex pain in a lot of women, and only buys a bit of time before the adhesions inevitably regrow again.

    There are ways to try and address the sex pains issue, pain killers before & after sex may be enough for some women, changing sex position might help in some cases eg. woman on top facing mans toes (but this can be even more painful for some ladies).

    On the whole though if vaginal sex hurts too much, then don't have vaginal sex would be my advice. If it causes pain then you are injuring yourself and that can mean more adhesions are likely as a result.

    So avoiding vaginal sex is definitely an option, there are quite a few other ways to enjoy intimacy with a partner and not cause yourself to have a painful experience. Some ladies may find anal is less painful for them, or oral or hand jobs or using gadgets and toys etc.

    It's best to be open minded and willing to try other methods of having fun which avoid vaginal penentration if that has become too painful to bare. Sex should not be something that hurts you, (unless that floats your boat) it should be a pleasant experience of intimacy that both of you enjoy.

    Some couples may prefer to just stick with cuddles and companionship, not go for the more adventurous options from the normal sex position. It's something you need to discuss with your partner and perhaps get counseling for if it strains a relationship.


    Now for the debatably more important part

    Addressing the incontinence issue and discharge issue.

    Both the incontinence and the change in colour of discharge are signs of an infection - perhaps not the same one either.

    The primary one needing checking is your bladder.

    Women with endo have a vastly greater chance for some reason of getting UTI caused by the dreaded e-coli bacteria.

    I say dreaded because it can be one of the most persistant bugs defying antibiotics.

    So many of us have repeat infections. It has absolutely nothing to do with personal hygiene or sex but everything to do with endo.

    Most of us have e-coli in the gut anyway. Part of good bacteria to help with food digestion.

    There are different strains of ecoli and rogue e-coli master or parent bugs can get in to the bladder and hide there behind a protective layer (which our bodies produce for them) called biofilm.

    Antibiotics can and do kill of all their children bugs in the bladder, but rarely are able to break through the biofilm that is protecting the pesky parent bacteria, so they hide in safety in the biofilm waiting for the right conditions outside the biofilm to be free of antibacteria, then the parent bacteria breed like crazy again creating lots of children bacteria. You end up with another UTI.

    It's easy to blame yourself for getting repeat infections, but actually it is the same infection - from the same super parent bacteria which hide in the biofilm.

    Ecoli does not cause necessarily cause the burning pee as your would normally expect from a UTI, it can do but s lot of us don't get that, however it certainly can disrupt your peeing habits by causing urgency to go pee or struggling to hold it in.

    So my advice is get pee pot, from the GP clinic (in fact pick up 4 if you can - spares to use later) then use one pot to collect a 1st thing in the morning midstream sample of your pee. I'm sure you have had to do that before so I won't get too graphic.

    Take that to your GP and they can dip test it there and then for infection.

    If the strip goes salmon pink (depending on the dip strip used) -hey presto.

    I would ask the GP to send it off to be identified too as a matter of course.

    if that comes back e-coli (which i suspect it will) then you know what you are up against.

    There other bugs that can cause UTI but for women with endo, the presence of endo provides e-coli biofilm with perfect living conditions and it is very common and very hard to kill off.

    You will get antibiotics - and these should rapidly kill of the millions of children ecoli in the bladder and help with peeing a great deal, but don't be complacent, the master ecoli parent cells could very well be remaining protected in there, so after you have completed the antibiotics, do another pee pot sample and get back to your GP to be tested again, repeat with perhaps different antibiotics, or doubling up of two sorts of antibiotics, depending on what your GP recommends.

    It can take some hard fighting to kill off the parent bacteria by breaking down the biofilm.

    It's the new big research world wide to find new antibiotic methods that can penetrate the biofilm.

    We are all becoming resistant to antibiotics being able to break through biofilm as each of us is exposed to more and more antibiotic, not only what we use ourselves but from the meat we eat in our diet which is getting antibiotics on the farms, our bodies create biofilm impervious to the antibiotics.

    Don't be too shocked if you get the same symptoms in a few weeks or even months time. however long it takes for the coast to be clear enough for the master bugs to get reproducing lots of children bacteria again.

    Repeat UTI due to ecoli is very very common for ladies with endo.

    If you use the search box on the green bar we have discussed this topic quite a bit recently.

    There's a report in today's daily mail on drug resistance and Ecoli in the bladder.

    here's one of the best descriptions of how the ecoli and other such bugs lives in biofilm city in the bladder and else where

    The ecoli infection (and it sure sounds like that is the bug involved) could be causing some of your pelvic pain

    and that is your No.1 priority - the sooner you get on the case the better.

    It may resolve the discoloured discharge infection too, which may or may not be e-coli related.

    Once you have the bladder infection and any others in the pelvic cavity under control again, even if you haven't yet killed off the parent bugs entirely, you'll know then what pain is bug related and what is either endo or adhesion related pain,

    It's still only 12 weeks since surgery, and post op pains can take a lot longer to ease off, even more so if your healing has been interrupted by your poor body having to divert resources to the bacterial infection sites.

    Surgical healing can take as long as 2 years to be complete, but certainly it is not unusual to experience some post op recovery pains for a number of months. Depending what was done in the op and how quickly you are recovering.

    My op pains were finally gone at about 4-5 months after surgery.

    I have had two bouts of ecoli infection in the bladder and both times no burning pain on peeing, just rapid urgency to go pee and both times a strange cooked bacon like smell to my pee which was more pungent in the mornings.

    I found first antibiotics ineffective as I was drug resistant, but the 2nd one did the trick (cannot for the life of me remember which drug it was now). When I got the 2nd infection i was straight on the antibiotic that worked for the 1st bout and

    that did the trick a second time too.

    Whether it was enough to kill it off entirely time will tell, but so far so good. Touch wood !!

    Very best of luck to you, please don't despair - getting control of your loo trips again will make such a difference.

    and your surgery pains can still have some recovering to do too. Things will improve.

  • I'm ecstatic that I found this post. I've been on antibiotics for six months trying to combat an e coli infection...I need to kill the infection so I can get laproscopic surgery to see if I have endometriosis. I'm in pain every day, pain during intercourse, I'm tired all the time and so stressed from all this. I'm so incredibly happy I found your post. Thank you.

  • Thank you so much! I'm at the doctors now so will see what they say! Very helpful ladies x

  • Thank you ladies! Just an update really! Went to my doctors today and my bladder problems is due to an water infection! I am on a strong course of antibiotics which will hopefully clear it up! Also she did an internal and took some swabs for testing due to my discharge but I could actually bear the examination which has never happened before!! So was quite pleased that I have overcome that phobia and pain! Got to go back in a week for swab results and if any problems will be referred straight back to my gyno which is a positive! Xx

  • Ahh well I'm glad you've got antibiotics,hope they help soon :) also good that your gp is taking everything seriously! Sounds like quite a positive appt? Fingers crossed you feel a bit better and all goes well when u get your results xx

  • I' sorry. I suffered for 20 years. I had endo on my bladder as well as I. C.. most of my pain was from the endo on my bladder. It was sticking to my small intestine no sex for 10 years. I cldnt even wear a belt around my waist. I was also suicidal. You must exhaust all efforts. I went from gyno to uro and gyno to urologist. I actually had to move away from my small town to find an experienced doc to help me after having three laps in Florida doctor wasnt getting all the endo off. I feel great now and only have problems with I.C if I'm constipated or eat the wrong food. Also u need to make sure your hormones are balanced. Estrogen stimulates endo but progesterone I.C. u still need both but identify if u can find which one causes pain and cut back on it. Do not drink bottled water with pottasium chloride. Identify pelvic floor dysfunction. Get on I.c. diet. Find only experienced doc. Do your research. Best of luck.

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