Wish more advice was available - Endo and Laparoscopy

Hi all,

I would just like to share my experience and would welcome any feedback from anyone who has felt the same, I'm sorry it's a bit lengthy, I had my first laparoscopy 8/8/14 this was to remove a dermoid cyst from my right ovary as we have been trying to conceive for over a year, whilst having this removed surgeon found that I also have quite a lot of endometriosis which he removed most off, and also discovered that I have 2 uteruses and 2 cervix!! I was in surgery for around 3 and a half hours, after surgery I was sore and bloated as I knew I would be and ended up having to stay in hospital for the night as temp kept rising and blood pressure very low, I went home the following morning the bloated tummy lasted for around 4 days before I could move more easily, I'm big on keeping fit and go to the gym each day and am definitely not one to sit around doing nothing feeling sorry for myself but have to say this knocked me for 6, It has taken me a good 5 weeks to feel I've really got my mojo back, I'd say the worse for me was the tearfulness I felt in the 3rd and 4th week I thought I was going crazy fine one minute then crying like a baby the next, I think half of this was frustration that I wasn't allowed to exercise but mainly hormones trying to get back to some normality. Looking back I would of liked to of been more informed of how I would feel emotionally and what I should of perhaps expected, I understand we are all different but alongside the generic information that is handed out regarding wounds, stitches etc nothing advises of emotions you will feel, I would have liked some information on how I may feel emotionally, I've also found my memory is not what it was , I'm only 35, I've searched the internet a lot and some say the general anaesthetic can contribute to these feelings. My cycles have gone back to normal but are a lot more painful and heavier I used to have very light periods with a lot of spotting and I find my boobs now get very tender 2 weeks prior to period starting. That aside I'm very glad that they found the endometriosis as I was getting a lot of pain in my abdomen and almost on every occasion that I ran I would get sharp pains in the left hand side of my abdomen which would stop me in my tracks it would dissipate after 10 minutes or so, I was also getting very bad PMS and backaches, I had been told that I had IBS but I think all this time it has actually been endometriosis, I remember being sent home from school with real bad cramps when I used to get my period and periods being really heavy, this stopped as soon as I went onto the contraception pill, which I've since read is prescribed to women with endometriosis as it helps symptoms reside, basically the more I've found out the more it made sense that this is what I had, again lack of information I've found out all I know from researching the internet, have any of you felt very emotional after this I would be really nice to know? Any questions please feel free to ask, thank for taking the time to read this. Xxxx

8 Replies

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  • Hi Poppy78, You are not alone. Wow you've sure been handed a lot of information to process all at once. May I ask where the sites of endometriosis were found? My advice given my lack of knowledge would only be to collect your post operative reports and pathology report for future reference. I learned a lot more than what they tell you from these. There are some very knowledgeable people on this forum hope you find the answers you seek. Take care.

  • Hi there, thank you for your reply, do you know I'm not actually sure but I think It was sticking something together near my kidneys as had to go for scan to check them about 2 weeks after op and not sure what side it was removed from but I think my left as that is where I was getting the most pain, I'm due to see the surgeon at the end of October so I will most certainly be asking for all this information.

    Take care xx

  • Hi Poppy and welcome to the Mullarian deformity club - there are probably about 10 of us now that I know about on this forum ...me included.

    I posted about the double uterus issue on a previous post - which included a link to a picture of the assorted degrees of deformity and their names.

    healthunlocked.com/endometr...

    If you want to have a read through - please excuse the spelling mistakes in it. I have keys missing from the keyboard and sometimes my fingers get in a muddle too. I was 41 when my uterus was diagnosed with problems, but I've had ongoing issues since Iwas 15 with one organ after another having problems then being discovered to be deformed or in the wrong place. So the news of the uterus (or uteri as I call them) was just another thing to add to the list. I was by then prepared for anything and everything to be deformed in some way inside or not working properly.

    Mine was never a safe for pregnancy size, just a mercyi didn't findout the hard way by ending up pregnant - but it isn't always that way. some ladies only find out when they have difficulty with delivery and need a C-section or sadly by repeated preterm ending of pregnancies because there isn't enough growth room for a full term pregnancy.

    If you do get pregnant by accident or design- it is classed as a high risk pregnancy from the very beginning. So you will be carefully monitored throughout.

    I have had left ovary tube and part of uterus removed as obsolete. Still have right side womb, tube and ovary in place and have a mirena coil inserted up the right side - which had to be done under general anaesthetic with the guidance of ultrasound to ensure it went in the right location.

    It will need another surgery to remove the mirena and replace it when the time comes. So I am no longer plagued with any painful periods or PMT and the endo has for the most part been removed too. so I'm in a much happier place than I had been in for decades.

    With regards to post-op-depression which is the emotional turmoil that you cannot control that happens after a surgery. This is not unique to women having gynae surgery.

    It happens right across the board, men women children of all ages regardless of the surgery they have had done.

    Lost of the ladies on this forum have found themselves lumbered with it. Very glad to hear you are on the up, had you not been noticeably getting better by yourself I would have advised to see the GP asap for a depression assessment. They wil lthen decide whether you're in need of anti-depressants to speed up your mental and emotional recovery.

    Schools of thought tend to blame the anaesthtics used - but I personally think there is more to it.

    Women who have been through pregnancy delivery end up with baby blues and can quickly find themselves in the grip of post natal depression and never had a general anaesthetic. I am of the opinion it is a combination of contributory factors that cause it.

    And how well you cope and how quickly you recover depends on the individual but at the first signs of it, it needs mentioning to your doc and if it gets worse over a fortnight then back to the doc for the assessment. it is a very common post op complication.

    And having endo does often mean IBS too,your gut lining being more prone to irritation in certain foods perhaps at certain times of the month - at any rate in spite of extensive endo ops, so many of us continue to have trigger foods that cause excess gas, irritation, changes in poop consistency and PAIN or trigger drinks that cause problems too.

    It's well worth each of regardless of how ill or well we are , to try and identify the trigger foods that do make pains come on or intensify more than the safe foods,so you can avoid them and stick to the safe foods and drinks as much as possible.

    i've been advocating this journey of self discovery for many years - long before anyone mentioned IBS or endo. From my own experiments - i cannot take alcohol, caffeine,fizzy pop, red meats,pink fish, love sprouts but they don't like me, and all sorts of peculiar foods i have to steer clear of.

    what suits and doesn't suit me may be different to others - we are each a unique creature and the only way to be sure is trial and error to find your trigger foods. by keeping a food/pain diary.

    Even the Daily Mail carried a really useful article on this very idea at the weekend.

    Do have a read - and save it - as it has excellent advice (for once!)

    dailymail.co.uk/health/arti...

    I do agree with your that post op depression should be a listed warning on any surgery patient guides, but there are just so many possible post op complications that can arise depending on the op and what you have done inside it would be impractical to cover all the possible eventualities in one booklet. Patients tend to skim read through them anyway before the op and only really take notice afterwards when something unexpected has happened.

    Depression is rarely mentioned in any of the guides for surgery or for recovery at home - there are NHS booklets on anaesthetics too and a host of processes. Google is very handy for looking them up if your surgeon hasn't handed you more than enough pamphlets already.

    For anyone with hints of post op depression there is an online assessment for the NHS

    nhs.uk/Tools/Pages/depressi...

    It is still worth mentioning to your GP as soon as you can spot signs.

    There are other options for treatment besides anti-depressants and these need discussing in consultation with the GP.

    Rest assured your experience is not unusual, but by the same token there are so many variations of lap op surgery depending on where the endo is found, that advice leaflets can only go so far.

    The hospitals to their credit sign you off sick for 1 week usually - which forces you back to see your GP to get a new sick note if you are in work.

    The difficulties arise when you are not in employment and wouldn't think that visiting the GP is worth bothering with after an op when you are supposed to be on the mend. unfortunately lots of depression cases will be missed or left to get much worse before something is done about it.

    it is still early days yet - and just as a word of caution periods can get disrupted by all that has happened and take some time to settle back in a recognisable routine again. That is normal so even if the 1st two after the op were to schedule you could still experience some disruption in the months ahead - from missed periods to long gaps or shorter gaps between them.

    Going back on the pill for a while is one option to try and return them to a routine if they do go topsy turvy all of a sudden.

    Hope you go from strength to strength - you seem to have coped very well so far, and it does get better, and post op pains will ease off as the healing continues inside. The whole process can take a couple of years - but you won't notice most of that.

  • Hello there,

    Thank you for taking the time to of read my post and for your reply which I have found very helpful thank you.

    I have now spoken to my surgeon, I was awaiting a call back from him as I felt I had questions I needed answering, the information I have been getting from the professionals including my surgeon seemed to differ from each one….

    So we had been told NOT to try conceiving for at least 3 months from the op no explanation was given as to why this was, but common sense told me that things would probably need time to heal properly.

    I then received a letter advising that we should try to start conceiving immediately after the op! my surgeon has now said that yes we should start trying! but has also recommended that I have the septum removed and has put me on the waiting list for the op, i'm hoping that we can fall pregnant without having this done, I dont know how big each uterus is but have been advised that it shouldn't really cause any problems during pregnancy if we are able to get pregnant, having researched for myself I understand that it can cause issues, as you have advised carrying fall term, higher percentage rate of miscarriage, baby will probably be breeched and need to be delivered by C- section none of this phases me, it is just nice to know that it can happen and that Ive been correctly advised rather then all of this seemingly conflicting and confusing information Ive been getting up until now, ( so glad Ive found this site) I guess my own conclusion is that yes it will probably cause a few issues but as long as I'm aware of everything I need to be then it should be no issue, if that makes sense! a positive outlook with a healthy body and mind is a good remedy for combating most pooey sticks that life can sometines throw your way.

    Ive read plenty of sucesss stories where women have gone on to have healthy babies and in a few cases twins but seperate pregnancies due to the 2 uterus interesting, and it makes us unique.

    I did phone my GP into the 3rd week after op because I was getting so tearful and it was starting to effect our lifes in a negative way, he asked me if I had been for my 2 week check-up, I had no idea I was supposed to of had one! he asked me a series of questions regarding the op which i couldn't really answer as I hadn't been told myself, so he advised I have some blood tests done to see If I was anaemic among other things, I didnt feel that I had any of the things he suggested, I thought I would give myself a few more days and if I still felt like I had then I would go get them done, ( I'm Not a big fan of needles) and probably a bit stubborn, I think sometimes we just have a natural instinct that we know ourselves well enough to kind of figure out what is wrong in my case I think my hormones just needed to settle down from what I had had done, and knew that once I could get back to exercising everyday I would strat feeling more me, which is exactly what I did do and did happen.

    I've also been told that the endometriosis will not cause me to be feeling emotional/hormonal, and on the other hand I have been told it will do exactly this, I think I now know from personal experience that it does exactly that, I abstain from caffeine, fatty foods, bread and potatoes and have lessend my alcohol intake, I only drink a little at the weekends in any case but found if I do have too much alcohol I'm quite emotional the next day of 2, I exercise regularly which really helps, and have found my trigger/pain foods (coconut) and drinks.

    I take Agnus castus, B6, magnesium, Starflower and evening primrose oil as I also get breast cysts, I do find these help regulate my hormones, which is what I found was causing me the most issues, but seemingly I have it at present in a good place.

  • You might want to reconsider the Agnus Castus it is not endo friendly.

    webmd.com/vitamins-suppleme...

    Read through the tabs for uses, side effects and interactions - there are several reasons why this particular supplement is not helpful for endo ladies and their other treatments.

    and Star flower or Borage is another to avoid with endo

    webmd.com/vitamins-suppleme...

    and so too is Evening Primrose. webmd.com/vitamins-suppleme...

    That website WebMD is very handy for checking the ingredients of supplements is a very good tool to have - so save it in your favourites and you can check products before buying or starting them or deciding whether to stop them.

    The reason Agnus Castus does make you feel better is that it is boosting oestrogen - which of course your body is craving because endo loves the stuff and relies on it, but it is not good to feed the endo.

    The Borage and Evening Primrose are not to be used when you have a bleeding disorder. Endo is certainly a bleeding disorder. Anything which promotes more bleeding is to be avoided because the damage from having endo is caused by the bleeds which land on tissue it is not supposed to be on, irritates it causing pain and imflammation and then adhesions grow and once they start they don't stop and can be a royal nuisance sticking things together.

    It is a juggling act, trying to find ways to feel better while at the same time reducing oestrogen levels and dealing with endo which is hormone sensitive disease and bleeding disorder.

    It is your choice though, and you can only do what you feel is best for you in the short (and longer term,) but now that you know you have endo - it is always something to bear in mind as a factor if you do head for the health supplements store.

    you can check the vitamins on that website too. Be sure to spell names correctly as 1 letter mistyped will result in a failed search.

    e.g. Starflower has no result but Star Flower does.

    it sounds like very promising news on the pregnancy front. I hope it works out for you. There was someone else on the forum who had the septum op. I can't recall who it was now, but i'll have a rummage through the old posts and see if i can find it.

  • Thank you again this is really helpful and interesting I never would of thought that it was not good for the endo, as I was more concerned with getting something herbal that hepled regulate the hormones so my search criteria was something like " supplements for PMT/PMS etc, I will no longer take these supplements now knowing, and will look for alternative supplements for the cysts, and up the intake on the green veggies.

    Hope all is getting better for you.

  • Hi Poppy78, thanks for sharing your experience. I am having a lap in November and I have to say that if it wasn't for forums like this one and people like you sharing your experiences I would not have any idea of what to expect at all. I think very little information is provided in your appointments and for me they always felt a bit rushed. Like you I only found out that that I had endometriosis after ttc for a while. I haven't had the op yet but endometriosis definitely made me feel hormonal and very emotional all the time, seems better now that I started changing my diet but I can imagine that it will make sense for the hormones to go a bit out of control after the op and make you feel emotional again... thanks for pointing that out. Good luck in the pregnancy front xxx

  • Hi,

    Thank you, i'm sure you will be absolutely fine, we are all individuals and things effect us differently in different ways, but like you say it's good to get some information from sites like these from women who have had the procedures etc, I have found it so helpful already and only joined yesterday as it has taken awhile to find a really good site like this one.

    Don't be afraid to ask questions at your appointments and tell them you would like more information, I wish I had, but when you dont know what to expect you dont know what to ask!

    good luck with TTC, and hope all goes well for you in November, please feel free to get in contact anytime especially after your op if your having emotional times, sometimes is just good know someone else has felt that way.

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