Endometriosis & laparoscopy

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I recently saw. Gynaecologist who said that I could have possible endometriosis. I have a small cyst and one of my tubes is slightly swollen with fluid. She advises that I have a laparoscopy as it's the only way to know for sure. I have suffered a while now with pelvic pain, back ache, stomachache, and more on than off shortness if breath with chest. Pain sad i am also being treated for IBS as I know that the symptoms can b similar although endometriosis can be connected to IBS. 

I am really nervous about having the procedure done and was wondering whether there is anyone who can put my mind at ease and how long re recovery process is? 

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  • Posted

    Hi Lisa, shortly before my 24th birthday, I moved to Germany to be with my husband. I'd been complaining of pelvic pain, horrific periods and IBS type symptoms for years (since I was around 16) and they were only getting worse. My GP in England kept fobbing me off saying that I probably had small functional cysts. 

    I went to see a gynaecologist here who examined me and revealed that I had a large ovarian tumour. They also said they suspected that I have endometriosis so booked me in for a laparoscopy a week later. 

    I'm now 2 weeks post op, endometriosis has been confirmed and the surgeons burnt and cut the deposits away. They also removed the tumour at the same time (which was benign). The surgeon said I had a large deposit of Endo in my 'pouch of Douglas' which is the space between your pelvis and colon/rectum. He said it's a very common place to have it. A few days after surgery, I was having shooting pains up my behind (like I'd get around the time of ovulation and during periods) whenever I needed to 'go'. But it's been a heck of a lot 'easier' and all IBS type symptoms have gone! My GP advised that the pains were probably due to everything being a little tender. 

    After the laparoscopy, I spent 2 nights in the hospital. I woke up with a swollen stomach and found that I had sharp pains in my shoulders at night for a few nights. This is, believe it or not, due to the gas they fill you with during the procedure. It irritates your diaphragm and I'm lead to believe that it's very common. The pain was eased with normal medication such as paracetamol. 

    I have 4 incision sites. One on either side of my pubic bone (these are tiny and have healed really really quickly with dissolvable stitches) and one in the middle. Some people have these incisions higher up, nearer their hip bones. And the other one is in my belly button and that's healed really quickly. I had a drain in my left incision which was a tad uncomfortable and hurt when they removed it but it's a very quick procedure. They give it a tug and its out before you know it. 

    I don't know where you live but I'm now taking a drug called VISANNE which is a drug specifically for endometriosis. I'm trying to hold it all at bay until I'm ready for a child. 

    Visanne isn't licensed in England at present however, I know that it's available in America, Canada, South Africa, Austria and Spain. 

    Good luck with your lap, I feel great now that I have an official diagnosis! Xxx 

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    • Posted

      Hi Red1990

      I've read your post and wanted to ask, my wife has been diagnosed with a 8cm endometriosis, and has been prescibed Visanne.

      She is worried that it will not treat the current growth and afraid of the side effects.

      Wanted to ask if you've had any side effects and if Visanne would actually help the treatment.

      hope your recovery is goinf well.

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    • Posted

      Hi red. Thanku so much for your reply. My gynae told me has swollen tube with fluid in and a small cyst. Would like to do procedure a thinks possibly endometriosis. I've had pelvic pain and down my sides and suffered with bowels. Doctor thgt it was IBS and gave me meds but I'm not too sure as I know endometriosis can cause same symptoms. 

      I woke at 5 this morning with stomach cramps an diarrhoea. I also had this 2 days ago as well which is so unusual for me as I am usually the opposite! Had lower back pain too and headache, all of which have read can b symptoms of endometriosis?

      I am scared having the op but I think in the long run I have no choice. Felt awful for the last few months sad 

      Glad you feel better after the procedure. How long would you say it takes for full recovery? 

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    • Posted

      Hi, I was diagnosed with endo 18 months ago and have had two surgeries since. The recovery time is about 2 weeks for the worste of it but my advice would be to ask about adhesion prevention.

      I was suffering with adhesions even before my first op as a result of the endo. The ops seem to have made it worse. I am unable to function on a daily basis without prescribed pain killers.

      Everyone is different and I seem to be a pretty bad case but you must ask about adhesion prevention. I am not sure if any was used during my op and I am due back in next week. I will find out then if they bothered to try to prevent me from getting more adhesions. 

      It is a catch 22 because without the op the endo may get worse and won't get any better but make sure they do everything properly!! X

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    • Posted

      Hi red

      I was just wondering how your recovery was going? I'm waiting for date for laparoscopy and I'm really nervous sad I'm having it done privately so dnt know if that will b of any benefit but as a NHS patient. 

      My scan showed slightly swollen tube and small cyst. Was told tube will possibly need removed. Is there any hope or comfort u can give me rolleyes many thanks

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    • Posted

      Hi red. I really hope you get this message as I am really in need of advice sad

      Had lap on Monday. Had cyst removed and my bowel was overlapping my uterus so something was done to correct that. However, I know it's only my third day after the op but feeling pretty rubbish still. 

      Stomach hurts and I have bad backache, appetite not great and still feel slightly sick. How long did It take u to feel more or less normal? And is my recovery going at the pace it should? I dnt know if I'm vein too hard on myself and not allowing myself enough time? I thought a week off work would have been enough but think will have to have 2. 

      I would be really grateful of any advice you can give smile thanku 

      Lisa

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  • Posted

    Hi Lisa

    I suffer from stage two endometriosis on the Ovaries, flopian Tubes, pelvic wall and intestines, i live with the pain constantly and i have had to change my whole lifestyle tin order to manage.

    I read your post and i really hope you are starting to feel better and that you have been able to get past the worst of the post op expereince. i have had 3 of them and it takes me about 2-3 weeks before i start to feel normal again. if you arent feeling great yet i would recommend that you try modifing your food intake, cut out all sugar and carbs for a few days, just eat veggies and fruit and drink water. i found that within two days of doing this i felt so much better.

    Keep strong you will get through all this

     

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    • Posted

      Hi Christine thanks for your reply. I am now nearly 2 wks post op. I had a small cyst removed only 3cm but quite large bowel adhesions also removed to the left pelvic wall. The gynae said that the bowel overlapped the uterus. 

      I am still feeling a bit of pain but tolerable and was wondering whether this will settle further? Is it normal for me to still feel like this? I amdue to go back to work Monday but not sure if need more time.

      I hope you are feeling better now, sounds as though you have gone through a lot! I u are still getting pain is there anything else they can do?  

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    • Posted

      Hi Lisa.

      The pain is pretty much normal and it will take a little more time to heal but you should start getting back to your normal way of life soon. If you go back to work on monday take a heat source of some sort with you. Like a hot water bottle or heating pads just in case and most importantly don't forget your painkillers. And easy on the caffeine it had a nasty effect on the pain for some reason. I would however see how you feel on Sunday and then decide if you are ok to go back... I always find the first day back extremely stressful and I always feel worse that day but it will get better. Just keep in mind that you rule your body not the other way around.. let me know what you decide to do

      I am ok thank for the concern. I am currently working on my diet and exercise to cope with the pain it's proving to be a lot of work but I am seeing results already. I should go back and have another laprascope done but I had my last one in may. So I am trying other means of controlling it first. 

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    • Posted

      Ah no. I hope it does settle. I dnt think if b in a rush to have another! You are right with diet though. First thing gynae advised was to watch diet. Easier said than done. If u r a great lover of veg & fruit hopefully this helps. I'm not really of either but have made a bit more effort smile so what couldn't they do in the previous laps hence your ongoing pain sad

      I have also had mild backache tr last few days. Is that normal with having the biwel adhesions do u think? And was wondering do u know how long the stitches take to dissolve? They're still there after 10 days. Dnt look as going anywhere soon! 🙀

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    • Posted

      you shouldnt have any back pain so i am not sure if that is normal, maybe give your Gynae a call and just find out, your stitches should have disolved by now as well, maybe a quick trip to your GP will be beneficial, thats if he knows about what has been going on and he can take the stitches out. 

      the pain is going to be a part of my life forever now, its just one of those things due to my level of illness, i also refuse to take hormone replacement drugs or go on the pill of any sort for it, as i am trying to fall pregnant as well. the best option for me is to have another Lap but i feel 2 in one year is a bit much. i love fruit and veg but i am not very good at eating them, so its been a difficult process to get into that routine and my boyfreind hates the stuff so making dinner in evenings gets interesting. biggrin

      I really hope that after you lap you have a chance of making a full recovery and this does not become a recurring thing for you. 

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    • Posted

      Ah I didn't realise you were trying to fall pregnant. Is it your first? I completely agree. I was offered hormone replacement but luckily endo wasn't found. I think the back pain could be because I'm not always regular but found drinking a cup of warm water first thing before breakfast helps! 

      I really hope it goes well for you and they can put an end to your pain sad

      Please let me know how you get on smile 

      Thanks for your advice too. I will have to ask about stitches because they still look firmly in tact still! 

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    • Posted

      yeah it will be my first, i have been battling with endo since i was 18 and i am 32 now, but its only been the last 3 years that i have really struggled. 

      I should try the warm water thing in the morning, i also battle with being irregular. 

      keep me updated on your progress as well, its been great chatting.

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    • Posted

      Ah so sorry to hear that. You are still young so don't give up, I am sure it will happen for you smile

      Yes I tend to put a drop of blackcurrent in it but if u can drink it in it's own even better! I used to go every 4 days but longer just before my op. If I stick to this water (take it first thing b4 breakfast) it makes me go every 2 days!

      It's been good chatting with u too. It's so easier to speak with ppl with similar experience. Sometimes I dnt think the doctors know that much themselves!

      Take good care & lots of luck 🍀

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    • Posted

      Hi Christine. Hope you don't mind me contacting you again only you know I mentioned I've been waking up with back pain and also noticed last cpl of days bit of pelvic pain again, I've checked my dates and think I'm due my period this weekend! Which I am dreading as I've read so much about the first being really painful sad 
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    • Posted

      Hi. No problem contacting me... The first one is bad. Unfortunately there is nothing you can do about it... painkillers especially designed for period pain as well as an anti inflammatory will help a lot.  The worst will be day 1 or day 2. Should only last one day... you will feel better afterwards. Just really sucks at the time... I am sorry for being so blunt but it's the only way... I hope you are ok
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    • Posted

      Thanks Christine. I've never really suffered much with periods and after my lap hardly bled at all but because of what treatment I've had I am a little anxious but as u say I've just got to go with it really & have the painkillers ready! I was thinking if going back to work Monday so I will c if it happens the wkd. I may not actually b on time after the lap rolleyes I've had 3 wks off so would like to get back to normal although my note still covers me for another week!

      Thanks for letting me know - I dnt mind blunt. Just want to get it over with 🙀

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