Hi everyone, I'm scheduled to have a laparoscopy on 7th February as I've been having intermittent pelvic pain, most of the time mild but occasionally sharp and throbbing. I've had tests and an ultrasound that haven't shown anything, so the gynaecologists I've seen think I have endometriosis.
I am quite anxious. I keep flitting between thinking everything will be OK - I'm going to a hospital with a specialist endometriosis unit, and the surgeon who will do my laparoscopy is a specialist in doing laparoscopies - to just blind panic. I've had a general anaesthetic before and it was fine, but I was a child then and I don't think I had any conception of what could go wrong. I don't REALLY think I'll die/have serious complications but then surely no one does!? When I get like this I find it really difficult to calm down. I also have a history of fainting at medical procedures, and I'm scared I'll become really panicked or will faint on the day, especially if my partner has to just check me in and leave me. I feel like a child but I really want someone to just make everything be OK
I'm struggling a lot with my emotions at the moment as well because I don't know what they'll find or what the outcome will be for me. I'm only 24 and have always been healthy, and contemplating having a chronic illness that may necessitate further operations or leave me infertile is horrible. I also feel a bit guilty because my symptoms haven't been very extreme, yet I know women often wait years and years before anyone will take them seriously.
Basically I am just struggling right now, and it's ruining the time I have before my laparoscopy because I'm just worrying all the time
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Aphra
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Hello, I can't say anything to make you feel better but reading your post just know that your not alone I'm exactly the same. Iv always had terrible periods but the pain seems to last through the month now. Unlike some of the stories on here I still work full time and I just live with it it doesnt stop me doing anything its just there. I started to take it more seriously as its been getting worse and having kids is so important to me. My lap is booked the 19th Feb, so I have all the same anxieties as you and think of myself as a bit of a wimp but we have to do it so we have a answer and we can manage whatever problem it is. Take care of your self and just try and not worry to much our bodies are stronger then we think as well as our minds xxxx
Hi, thanks so much for replying! It does help to know I’m not the only one feeling like this. My periods can be really bad but haven’t been that bad recently, it’s just that the aching/pressure lasts a lot of the time. It goes down into my legs too which is uncomfortable. I know you’re right and i know I’m not a high risk case by any means, I just struggle with “what ifs” and get caught in spirals of anxiety. I will let you know how mine goes, if that helps at all!
Hi oh my gosh I couldn't tell if I was reading someone else's post or if it was my own words for a moment!!
I am bricking the thought of a laparoscopy. That being said, I also suffer and have suffered horrendously for years with all the symptoms of endo. The last 6 months or so, I've had progressive pelvic/hip/leg/buttock pain on my left side.. I'm convinced it's endo and I'm awaiting a referral for a laparoscopy.
I'm sure it won't be as bad as we imagine, and reading a lot of the stories on here I find helpful to boost my courage when I feel nervous and scared. Most of the time I have feelings of pure panic when I think about going under anaesthetic.. like yourself I was only under anaesthetic in the past as a very small child having teeth out! The good news is that atleast we know we will surely be OK with the medication so that's a positive right!?
The other thing that's helping me is that I cannot bear the thought of being in more pain every month and also not knowing what the issues are. Myself and partner have been trying for a baby now for 2 years with no joy - he's fine and we are both just 26 so it appears to be something such as endo also interfering with this part of my life!
I work full time, I grin and bear it but this month I almost had to go to A&E. This is my focus point. What's yours? Remind yourself why you have been going through this awful experience of trying to get seen for endo and having a laparoscopy because by all accounts, it's not an easy thing to arrange! I've had these issues for over 10 years or more.
Try to do the things you enjoy to keep your mind preoccupied in the mean time hun and the absolute best of luck!! Think how chuffed you will be as soon as you wake up - you'll have done it and how very brave of you. Keep focussed and try to think positive xxxx
Hi, I'm so sorry to hear you're in so much pain and that you've been struggling for so long. Thank you for your kind, thoughtful response - you're right about the anaesthetic and I've found the thought that I've had it before comforting too. Thinking about a focal point is a good idea too - mine is that I've had various pelvic problems for some time now and no one really seems to know what's going on, so it makes sense to escalate things in order to find out. I'm not at the stage in my life where I'd realistically be able to have children yet, but leaving it and then finding out I can't (which is what happened to my aunt, who has endometriosis), would be horrendous. I would much rather find out now than in several years time when having children is something I desperately want.
Regarding my referral time, I think I've just been lucky in that my local hospital has a specialist endometriosis centre so the gynaecologists I've seen have been really willing to consider it being endometriosis and actually do something about it. I was fobbed off A LOT before I got a referral though - I spoke to several GPs who told me that pelvic pain/discomfort was just "something that some women have", but I knew from finding this forum and others like it that no, it's not normal, and basically kept going until I saw a doctor who agreed that it wasn't normal and that I should see a gynaecologist.
My partner and I have KonMaried our bedroom this weekend, which turns out to be a great way to keep yourself distracted (plus our drawers are really neat now!) XXX
I think every one of us on here have been fobbed off in some way shape or form in the past! I'm glad your finally being taken seriously and it sounds like your in the right place.
I wish I'd shouted more about my pain sooner so atleast now we are in the position to try for a family, we could have gone straight onto IVF if we were having these difficulties.
You're doing the right things and good luck for the future hun x
Hi aphra, I felt exactly the same last jan waiting for my laparoscopy and hysteroscopy. My symptoms were very similar and so were my emotions... other people suffer more than me, why am I such a wimp, what will they find, do I actually want to know what is wrong with me, how will this effect my future health/ fertility? In fact, you start to doubt your pain and suffering, comparing yourself to other stories that are horrendous. My advice would be firstly to stop comparing yourself to others. You are unique and only YOU know how you truly feel. Deep down you know your own body and that something isn’t right otherwise you wouldn’t have seen a doctor in the first place, it will then be a bonus if everything is ok. Secondly, (my husband always says this to me because I worry about the effects of anaesthetic and always think I’m going to die) it is your choice whether to have the procedure done and remember you don’t have to even though it may be the right thing to do medically. The journey of diagnosis and treatment of endometriosis is a difficult one as it is for any condition, your mental health may suffer, relationships may suffer because you feel no one understands what you are going through, work and everyday life may change as you try to find ways to cope with the pain and emotional side of things. Whatever happens, your symptoms are there and I guess it’s up to you if you want to know why you are having them. Either way it will be difficult to deal with but you have made a good start on reaching out to others which really helped me to feel less isolated. I have suffered with symptoms since the age of 16, looking back now that I have a diagnosis. I know my story is similar to many in that for years I was telling the doctor the pain wasn’t right and that my periods were abnormal to be told (mostly by male GPs) that they were normal and that I should just take paracetamol etc. Early last year I was close to giving up and went one final time to the Nurse practitioner who was female and she referred me to a gynaecologist. Within a couple of weeks I was referred for laparoscopy and hysteroscopy. I was terrified and felt unprepared but also relieved that I was being taken seriously. The procedure was booked for March so I had about an 8 week wait which was agonising mentally. I thought about not going ahead with it but knew in the end I had to for my own sanity. I had the procedure and was diagnosed at 32 with stage 4 endo and adenomyosis, again I felt terrified and relieved that maybe they could treat it now that they knew what it was. Since then it’s been a rollercoaster of emotions and I am now waiting for another hysteroscopy to remove a polyp before starting IVF, this time I am not so nervous but again still had the possibly irrational conversation with my husband that I might die. It is a normal response I think to something that is unknown and quite frightening. The point of me telling you my story is to try and help you feel better and let you know that we are a community and you learn not to compare yourself to others. There will always be someone else that has had a worse experience than me but We are all suffering in own ways. It is really good to hear that you are being taken seriously and the earlier they diagnose the better they can treat it so try to stay positive whatever happens and as I said before if all is clear then that’s a bonus too. Good luck with whatever decision you make and always remember to talk to others for support but don’t compare yourself. Kind regards Hannah 🙂
Thank you so much for this post, Hannah! The thoughts you describe are exactly how I feel. I've definitely been comparing myself to others which doesn't help, and it's particularly silly when I've been very open with doctors about how my pain fluctuates - most of the time it's almost more like a tension in my pelvis, but occasionally I get a pain right through the centre of my pelvis that makes it difficult to walk and is really really unpleasant - and they've still thought it's most likely endometriosis and that a laparoscopy is the right next step. I'm so glad to have been taken seriously (GPs either dismissed my pain or asked if I could have an STI and wanted to send me back to a sexual health clinic, where I'd already had clear swabs), but a bit scared by how quickly everything is moving! I'm really glad to hear that you were able to get the treatment you needed - it's good to hear from so many other women who have had a laparoscopy and it's been the right thing for them
Hi, I'm due my 3rd laparoscopy on 21st Feb. As others have said, it is a totally normal reaction to have when facing surgery. You wouldn't be normal if you weren't anxious! The nursing staff are very good at putting you at ease and ask any questions you have if you are unsure. I'm obviously a bit more relaxed as I've been through it before, but my last lap was 10 years ago and I now have 2 children, so my biggest worry is how I'm going to get any time to recuperate!! 😳
The worst bit for me with both of my previous operations was the gas pain in my shoulders. I was totally unprepared for this, so make sure you arm yourself with peppermint tea, peppermint cordial, suck mints, take bisodol, anything that helps trapped wind basically! You may not feel like it, but the sooner you can get up a move about the better in relieving these pains. I don't remember the actual keyhole sites hurting (I had 4, 3 along my bikini line, and one through my bellybutton) and only remember having period type pains (which we are obviously used to anyway!).
My second lap was for excision of stage 4 endo. I was very tired after that due to the anaesthetic and length of surgery, but I am convinced it was that that allowed me to get pregnant naturally after being told it would never happen due to the severity of my endo. So I would say keep in mind why you are having this done, what the possible positive outcomes are i.e. a formal diagnosis, a treatment plan, potential improved fertility, and what the possible outcomes of not having it done are i.e. more uncertainty. It can feel scary, but in my experience it is worth it. Good luck!!! Xx
Hi, thanks so much for your response! It does help to remember that nervousness about surgery is normal, and thank you for the reminder about things to ease gas pain!
Keeping in mind why I'm having it done is a good idea too - I'm essentially worried that if I don't have it done my symptoms will escalate or that by the time I want children I won't be able to (this happened to my aunt, who has endometriosis). My symptoms aren't unbearable now, but there's something clearly not right and that seems to be enough for the gynaecologists I've seen to think that a) it's reasonably likely that I have endometriosis and b) that a laparoscopy is sensible.
I'm also really glad to hear that you've been able to conceive naturally, as that's something I'm worried about! XX
Hi, it's so good to hear from someone who also has a history of fainting while panicking! I think I will ask at my pre-op if I can go in on a trolley bed as I really think I will go if I have to stand up at all. I've actually had CBT in the past and am going to revisit what I learnt from that in order to tackle unrealistic thoughts I've been having. Breathing properly is good advice too - thank you!
Hiya I had my 3rd lap on Tuesday (2nd for endo) and I could have written this post. I was terrified. I barely slept in the week leading up to it and was having terrible thoughts about something bad happening. I got in such a state when I got into the operating room they had to sedate me before they put me under. I was crying, shaking, panicking, my heart rate was sky high. Then low and behold it felt like I shut my eyes for 1 minute and then it was all done and yet again I'm back thinking what on earth was I so worried about. Nothing anyone will say to you will make you nor worry and as others have said it's totally normal to worry! However just remember how many times they've done this procedure. You're young and usually fit and healthy. And I must admit (I'm 26) this is the main thing that helped calm me. Good luck xx
Hi, thanks for your response - it is helpful to remember that I’m a really good candidate for surgery in that I am young and as healthy as can be expected for someone who needs a laparoscopy!
I’m really sorry to hear you are feeling so frightened. For me, today is Day 9 of constant increasing pain that codeine is not hitting at all. I have no clue when I will finally be seen in gynae but I am desperate to have a laparoscopy so I can have peace of mind and know what is going on. How long did it take for you to be goven your lap date?
As someone with anxiety that becomes severe in regards to anything regarding medical things, just think about the good this could do for you - knowing what’s wrong and why your body feels the way it does. I’m only 19 and feel like facing the potential of endo is horrible. But we can all do this. You are strong. You are amazing. You CAN beat this 💖 xx
Hi, I was referred by my GP for an appointment in October; she thought I would receive an appointment to see a gynaecologist before Christmas but it was actually mid-January. I’ve seen gynaecologists at the same hospital last year for bleeding after and pain during sex - I had a cervical ectropion and that was treated. The worst part was trying to get a GP to refer me, as they just kept wanting to send me to a sexual health clinic (who would always say that I needed to talk to GP about a referral as nothing showed up on my swabs).
Thank you for your kind words - it’s hard to feel strong when I’m anxious! I have calmed down a lot now - the support from women here has been amazing xx
I feel your emotion and I’m now going through more as I don’t know if I need a major bowel op but I work full time I have my own business and it won’t beat me !!
You will be fine with your laparoscopy
I know how anxious u are believe me I’ve been suffering with sever panic attacks for two years because of having to have ops
But I know now how to control them , no one like anaesthetic but when we need to be checked out they have to do it ...
I’ve had 5 ops for all sorts of things in the last two years and before that I had never been out to sleep
Think I’m a pro now lol
Anyway your not alone I know that’s hard to think I feel very alone at the moment with my issues but this forum has been great !
Keep us posted I have a mri in March to see how be my bowel is
I’m so sorry to hear that you might be facing bowel surgery - that must be scary. This forum is a really amazing resource and I’m so glad I found it - it’s really helped calm me down and feel supported xx
Hello, I am the same age as you and when I was waiting for my laparoscopy surgery I felt exactly the same as you! Everything you are feeling is normal.
The idea of having a chronic illness is frightening, and it still freaks me out that I have one. However, it made me feel so much better knowing that it wasn't all in my head and there is something wrong with me, it is treatable, although not curable and there are options!
You definitely sound like you have the symptoms of endo, very similar to me. I had excruciating pain and it turns out that most of that came from my bowel being stuck to my uterus lining and since they separated that I feel about 85% better which is absolutely amazing!
I have written a detailed blog about my surgery experience if you would like to read it? I literally wrote it for people like you who have never had a surgery like this before and wanted to put them at ease, I think it might help?
Let me know, and if not, good luck! Any questions please don't hesitate to ask.
Hi, that's really reassuring - thank you! I would like to read your blog; it's definitely helping to learn more about what other women's experiences have been.
No problem at all! I went in not knowing what might happen and it really isn’t as bad as what it feels like it might be. It’s jadesendojourney.wordpress.com
Please don't worry. I know its easier said than done but the worrying is the worst part. I had my laparoscopy about 8 weeks ago to find out why I was in so much pain and they found out I had endometriosis.
I was just like you, most times I go into hospitals I would faint but just keep telling yourself that you're having this done to get answers.
When I had mine done, my partner was with me right up until I had to walk down to theatre, then when I was wheeled out of recovery he was right there waiting for me.
Again I was just like you, I was in pain but not like other women who sometimes can't even get out of bed but everyone is different.
The outcome of mine was that I have endo but only a very small amount.
Please don't worry! Good luck with the operation, let us know how it all goes.
Hi everyone - I thought I’d give you an update. I had my lap this morning and I do have endometriosis - small deposits all over the walls of my pelvic cavity (on my uterosacral ligaments) and in my pouch of Douglas. My bowel had also adhered to my left hand pelvic wall. They removed the deposits of endo and cut my bowel free. The operation only took about 1 hr 15 min which is pretty amazing! It was SO much less stressful than I imagined and I’m so glad I had all your support - this forum has been invaluable in both knowing that my symptoms weren’t abnormal and in knowing what to expect before and after surgery. I’m in less discomfort than I thought I would be - the gas pain is mostly at the base of my neck which is a very odd feeling and my incisions feel sore now, but I mainly had cramping earlier. I’m really relieved to have a diagnosis and to know exactly what’s going on! Now looking forward to recuperating on the sofa
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