I'm due to have a Gynacologist appointment in around 2 weeks time. The likelihood is that they will refer me for a laparoscopy for a number of reasons (including a strong recommendation from a private endo specialist).
I was wondering if an NHS Gynacologist can refer for a laparoscopy to be undertaken by a BGCE registered surgeon/ centre?
My assumption is that they just refer onto the general NHS list but any info greatly appreciated!
As we have fertility issues, I really want to ensure the person 'fiddling around in there' has the right skills and knowledge of endo so I'm a bit nervous about the process and whether this is something that can be arranged..
Knowing this info in advance, helps me to prepare for the appointment and ask the best questions.
Thanks!!
Xx
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In my case when I was referred to a gynaecologist they were the ones doing the laparoscopy for me. I had to see my GP for a referral for the gynae and also specialist.
How did you get the appointment with the gynaecologist you are due to see?
Also I would strongly advise to have your lap with an endo specialist so if you are due to see a regular gynaecologist if you can try be referred to specialist even if it means waiting longer for the lap I would say it’s worth it xx
Hi thanks for responding! I've heard that an endo specialist is the best option.
How it all came about, it's a bit iggledy piggledy to be honest!!
I've suffered with endo related symptoms now for going on 12 or so years probably more however the contraceptive pill always regulated things and minimised the pain I had each month.
Many years ago, I had a numbness in my one arm which temporarily parylised. After numerous scans they figured that it was because of the pill that I was on and suggested to try alternatives such as the mini pill.
I could never get on with the mini pill and as a result I have been off any contraceptive for about 5 or so years - off and on.
In the last 2 years, I've been doubled up in pain, so much so that I've had to take time off work (I just see this as the norm) but recently I was in bed from 9am until 5pm as I physically couldn't get up (thankfully if was on a Sunday so didn't have to worry about work!)
I now have problems in my one leg/left side of pelvis - pretty much at random points all through the month and pain during my period almost makes me faint. Sickness and diahreah is a definite when I'm on my period.
With all this in mind, I was referred to a Gynacologist back about 5 months or so - for fertility issues. Up until then I had accepted the typical endo symptoms (apart from being bed bound that one weekend) was normal and something I just needed to live with.
The referral was made with fertility in mind but then sped up (not hugely I must say as I waiting so long already) for the endo related issues that my GP has known about for years.
I guess, I was in more of a rush to sort the fertility concerns not realising endo could be a HUGE factor to it so with the Gynacologist appointment coming up, I figured whatever the outcome I should go along - even if it means starting again on a brand new waiting list! But hopeful that someone can give me assurance that this is something they can do!
In hindsight I wish I'd pushed things further many years ago 're. Endo but only recently has the pain in my leg and buttock been regular and fairly constant, and only last month have I ever been bed bound in agony for the entire day without any drugs such as codeine having any affect!
Sorry for the long ass story and answer lol basically I was referred for fertility issues (2 years trying to conceive with no joy) but followed up on my endo concerns a little while later after seeking private advice.
Ah yeah that makes sense! Wow 2 years I’m sorry you’re having trouble conceiving, yeah endo could be the reason for that. The reason why I say push to see an endo specialist is because I had my first lap with a general gynaecologist and he missed the endo that was there so I try encourage anyone I speak to re suspected endo to see a specialist to avoid having repeat laps and let downs and stuff. Although if your gynae specialises in fertility it could be likely they know a fair bit about endo. Just make sure you ask questions like how many people have you treated with suspected endo and things like that to make sure you’re seeing the right person and if at any point they make you think you’d be better seeing anyone else then fight for that outcome
I hope this works for you and you are able to have a baby 🤞🏻 fertility issues have been constantly on my mind since I heard the word ‘endometriosis’
Good luck and let us know how you get on with your appointment!xx
Thanks so much - they are really good tips you have shared and the questions you have mentioned I'll definitely write down!
I just want to make sure the right person is involved to help with both situations.
The fact of the matter with us is that without these fertility issues coming to light, I'd have probably still been grinning and bearing these awful symptoms.
That being said, being bed bound last month was insanely painful and debilitating so in anxious for this months period.. due to arrive in a weeks time and no doubt I'd have followed up an endo concern without the fertility issues if we hadn't been trying.
Thanks for your lovely well wishes and for sharing your experience xxx
P.s try not to worry too much about endo and fertility because I've read more cases from people that have conceived with endo than without as it's still highly likely that there will be no issues - especially if you've already had treatment so good luck for the future lovely xx
Hey- you would have to be referred through your gp BUT I had my first lap done by a general gynaecologist and she did manage to clear most of my endo... we were also referred for fertility issues and ended up having ivf which failed but conceiving naturally after almost 3yrs xx
Hi! Amazing news that you conceived naturally!! Thanks for sharing your personal experience, it sounds very similar to our story- hopefully we will have the same lovely outcome too xx
Hi lovely.
Sorry to hear of your fertility struggles. Been there ( we tried for over 7 years )
Regarding laparoscopy as they won’t know location & severity beforehand you will most probably have a laparoscopy with a general gynaecologist or maybe your fertility doctor. If it’s proven to be to severe or complicated endometriosis is its growing on organ not pelvic you will then be referred to a endometriosis specialist that is BSGE registered.
I had my first laparoscopy June 2017 & it was done by my fertility doctor. It was found in pouch of Douglas and rectum at the time it was mild ( but believe me that means nothing with endometriosis because I had every symptom & loads of pain with it) he removed the endo from my pod but left 2 spots on my rectum believing it not to cause issues with TTC. He was right because I conceived the next cycle! First time in 6 years of not managing to! Unfortunately it was an early miscarriage & my endometriosis returned worse.to cut what is a very long story short I ended up having a laparoscopy in March 2018 with a general gynaecologist ( referred by my fertility doctor) & as endometriosis was so bad my fertility doctor referred me to a endometriosis specialist that he knew. I had my third laparoscopy in July 2018. I conceived 2 months afterwards & am now 23 weeks pregnant with a little girl 💗 I hope in 20 plus years technology has improved when she’s grown up & there is a simpler way to diagnose endometriosis. I’m sure women wouldn’t suffer so long if it was easier to diagnose 🤦🏽♀️
If you have any questions on laparoscopys please feel free to ask me
Hi thank you for messaging! I've been following your story and lovely comments on people's pages - thank you for all the support and info through your own experience that you constantly share, it's really appreciated.
Congratulations on your pregnancy!!! Amazing news.
Your info on laparoscopy and who should be doing what is especially useful. I'll be sure to ask my Gynacologist some questions off the back of what you have shared ie. If they will do a thorough investigation and be able to check hard to reach spots - I have endless pain on the left side of my pelvis going down my leg and back so I'm worried a general gynae won't be able to diagnose that or reach that area as it sounds like frozen pelvis/ sciatic endo. My concern is that will be missed and that's the biggest problem I have each month - off and on nerve pain so it feels which travels down my buttock and thigh.
I had pain lower left abdominal side throughout my cycle especially bad during periods. It was near my hip. I used to think it was ovary pain 🙄 I went to hospital a few times with they thought I burst an appendix. It turned out to be endometriosis on my pouch of Douglas ( between uterus & rectum) & rectum.
My symptoms were;
-unexplained infertility
-I had heavy periods with huge blood clots which made me anaemic.
-Lots of period pain which painkillers couldn’t touch.
-Bleeding & cramping between cycles.
-chronic pain lower left side.
- severe pain with simple pelvic examination & sex if deep ( sorry if too much information)
- constipation & diarrhoea leading up to period.
-severe pain after bowel movement felt like a knife up me 😳
- developed a intolerance to dairy & gluten.
I hope that helps.
It is difficult getting a referral to an endometriosis specialist until you have proven severe or complicated endometriosis, but you can try.
My fertility doctor managed to see my endo as did a general gynaecologist. I was referred when my endo was all over my rectum & had to be operated on by an endometriosis specialist.
The info you have shared about your own symptoms are almost exactly the same as what I experience!!
Thank you for sharing them with me, your descriptions sound much more technical and specific than how I would describe them so I'll jot a few down and take this with me to the appointment.
I've recently experienced severe diahrhea or however you spell it after eating certain foods. It's so bad that it comes on probably within the hour and it's disgusting!!
I've been told in the past that I have IBS but I've never experienced anything quite like this so wonder if that's a symptom.
Deep sex (don't worry there is no shame here!) Is also very painful for me so certain positions are a no go! Which makes things difficult when we are trying to spice things up during TTC lol xx
Glad it helps, maybe yours is in a similar place to mine.
I was also told IBS, but couldn’t explain my gynae issues! I knew the pain & symptoms weren’t normal.
Trouble is ladies issues aren’t taken seriously enough & labeled as “part of being a woman “. 🤦🏽♀️ I find the system very frustrating; I had issues with my periods since they started. I had unexplained menstrual cycles for over 3 year which I was under several gynaes for because first fertility doctor was so dismissive of my concerns 🤦🏽♀️ and unexplained infertility for nearly 6 years 🤦🏽♀️ but at least we got there after 3 surgeries & 7 years later 👍
I really hope by us ladies fighting these symptoms aren’t normal helps the next generation. I hope in years to come there is a less invasive way to diagnose endometriosis & prevents such awful delays in diagnosing endometriosis. I think GPS need to be better educated over it; they are so important as they are our first port of call & need to recognise it better. The average women takes 8 years to get diagnosed with endometriosis & that is no way acceptable.
Really glad you are getting this laparoscopy & hope it helps you conceive. 😍As well as ease your awful symptoms ❤️ xoxo
You're so right! It's often hard to explain the symptoms you are having and to link them up so the doctors can join the dots!
Because endo is such an unknown it's lastly talked about I guess. They should know better and I also hope that in the future this knowledge will increase for the better and people will be able to access quicker diagnosis and support!
Thanks for sharing your experience with me. Best of luck for the future xxxx
Some of the specialists on the BSGE.org/centre list are NHS, although they often have private practices as well. From the pain going down in your leg that would suggest that you have endo far down in your pelvis so a specialist is a must. You have a right to be treated at the centre you want on the NHS, so just look at the list and pick our the nearest one with an NHS email address and demand to go there with the specialist.
Thanks for commenting!! That info was especially helpful, I've found a local BGCE centre that I also know of a friend that has been there having ' one of the worst cases of endo they ever seen ' so I know they come recommended.
I'll be giving them a call tomorrow to find out their referral process in advance and will take that info to the Gynacologist that I see in under 2 weeks time.
I'll also do some research into the consultant I've been appointed to see to try and find out their specialisms.
I really don't want a diagnostic lap and to then have another if endo is found so want to minimise surgery as much as possible. IVF sounds scary enough, so one lap for the near future sounds enough to put my body through if I can! Thanks again hunny xx
Yes NHS doctrs and your GP will recommend you to BGCE specialist on request or their personal recommandation,and these are the best people to treat endo,do not go genral gyne for lapro.
There is a very precise 'protocol' for the referral of endo patients to BSGE Centres, which GPs and general Gynaes are supposed to know and follow. I would contact the people at 'Endo UK' [they 'host' this site on 'Health Unlocked' : see link to Endo UK at the top of this site] and they should tell you what to ask for.
My understanding - from what I have read on here - is that most women have to be referred to an NHS Gynae for a first lap, just to see what is going on.
I think you will/ should have the option of making it very clear to the Gynae, that you just want an exploratory and diagnostic lap, without any removal. If the Gynae then thinks you need the types of ablation/removal that can, only, be safely done by a BSGE surgeon, then he should refer you to a BSGE Centre. The downside of this, of course, is that if your Endo is considered not needful of seeing a BSGE Surgeon, then you will have to have another NHS one for the removal.
Your GP should have a copy of this 'Protocol' and should know the ins and outs, so you could try asking for all the detail … but I would wait until you are armed with more info from here and from 'Endo UK'. Most general gynaes are good, but many are not skilled enough to access all the 'difficult-to-view' areas of the abdominal cavity, where endo can be hiding. Also, some do not recognise all the different types of Endo tissue, plus they are often not as skilled at the removal of Endo Tissue. Also, if you have Endo in dodgy areas, such as on the bowel, then you MUST be referred to a BSGE Clinic for it's removal, as BSGE Centres work with abdominal, etc. surgeons, who do the removal of Endo in awkward places, like the bowel, pouch of Douglas etc. You need to show that you know your rights.
I did not know all this at my general lap - about 2007 - when some endo was removed. Although things were easier for a few months after the lap, things quickly got much, much worse than they before. I was lucky that another Gynae then suggested a mirena coil, and arranged an NHS fitting under anaesthetic. I was fine with the Mirena, no Endo pains - and then once I was safely post-menopause, I had it removed, and have been fine since. But, mirenas don't work for everyone.
That's really helpful thank you for such a detailed and informative response. As I have pain every month and now during the month off and on, on my left side going down my leg and buttock, my concern is that I have it on my sciatic nerve causing frozen pelvis - I've avoided any endo symptoms for years and years just putting up with the pain, but this addition makes it unmanageable and unbearable. I'm scared to death for my next period given that last month I was in bed between 9am until 5pm unable to even move. Codeine didn't touch the pain.
Period pain has always been a massive struggle and has meant occasions being off work; doubled up in pain, feeling faint and nauseous but the pain last month was something else.
The reason for my post is to get as much info ready so that I'm armed with this for the appointment. The original reason I was referred was based on fertility issues but with the increase in pain and daily difficulties that's second priority now unfortunately. I need to get this endo concern looked at because I can't cope with the pain. It's a pitty this all hadn't come to a head before the fertility issues so I could have ensured a referral to a BGCE centre but life has a way of chucking things at you in a random order doesn't it
GrittyReads is referring to the NICE (National Institute for Health and Care Excellence) guidelines, which states that women should be referred to "a specialist endometriosis service (endometriosis centre) if they have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter."
I hope this helps and if you want to speak to someone, we have a free confidential helpline staffed by volunteers with experience of Endometriosis and you can talk through things with them. The number is 0808 808 2227 and you can find details of the opening times here:
So I was in the pill for 12years as all the usual painful periods etc as a teen so drs put me straight on the pill. Worked great couple times forgot to take it but nothing happened. Fast forward 12years my partner and I got married and I stopped taking said pill to try for our family. This was in 2016. I have since done nearly 3years without contraception and it’s agonising. Backwards and forwards to the dr as my pain was/is not normal.
Finally got a referral they did a diagnostic laparoscopy and found endo (yay- I have a reason for all my pain it’s not all in my head like I was told). He told me I’d have to choose fertility and pain or no pain but no baby. We really wanted a baby so we went with the pain option.
We then had an appointment with a gynae who said I think you need to make a decision as you no have complications and we don’t know if the ivf will work in your current state you can try but we don’t know the odds. (I’m paraphrasing- it’s quicker 😂) or you have surgery remove the endo and the cysts but you will lose eggs but have better chance going forward.
So the short story is our gynae referred me to my bgse specialist not my gp. So it is completely possible.
I decided that for me I couldn’t do the ivf knowing my body was riddled with this disease (which I call my natural contraception as I have never fallen pregnant since coming off the pill) and that the hostile environment I seem to have could effect my baby from sticking around. I am currently awaiting surgery number 2 to remove endo via excision surgery to give my ivf the best shot possible. Although am secretly hoping it will happen naturally beforehand.
Hope this is helpful after all my waffling on good luck
Your waffling had been so helpful!!! Your waffling is how I speak and communicate so fully understood lol. Thank you so much for commenting.
Bless you, having to choose between pain or a baby. It's so awful. It sounds like you have been through a lot!
Me and my partner have been TTC now for 2 years and it's emotionally draining! I just need some actions in place to keep my hopes up - and ofcourse we also have our fingers crossed that it will just happen naturally!! (You hear so many miraculous stories don't you!)
Lol when I have to start talking to ppl about my condition I literally feel like I’m just waffling on constantly.
Thank you it’s been quite a ride so far and one that my poor hubby didn’t technically sign up for as we didn’t know when we started trying that I had it. So honestly don’t know what I would do without him. Thank you and so much luck to you going forward fingers crossed xxx
Same here!! Myself and partner have always had things quite easy! We have been together now 10 years this year and were talking in the car the other day and he said.. do you know what, we have good jobs, a good family, nice house, happy life.. I knew that something would test us and here we are! Bless. It's true, TTC is such a journey and one that I never thought I'd have issues with - never mind endometriosis potentially playing a HUGE factor!
OMG this is literally us but it was me that said it not him. After I found out I was glad I had the diagnosis as before that I kept having to say I didn’t know what was wrong with me. But we too had the same conversation good jobs steady relationship (13yrs sept 🙈) house and mortgage etc and the bit that meant the most we can’t do/haven’t got. I’ve had to watch so many relationships fall apart and see children (I work in childcare) whose parents love them but because of work don’t understand what they have that others would long for.
I now tell ppl I live with the symptoms because they are what cause me trouble but I also have a natural contraceptive. X
Haha it's crazy isn't it! Some months I tell myself that atleast this way, we will appreciate it so much more.. other months I'm up and down like a nutter. Constantly wondering if any sign is a symptom of natural pregnancy!! It's horrendous the emotional ups and down you constantly go through.
I'm yet to have an endo diagnosis but 99% sure that's what it is! Like you, I'll be relieved if they find anything because right now .. we should be having zero issues conceiving so my logical brain is telling me that there is something wrong. Endo is getting a bad mouthing off me at the moment because I'm certain it's that!
Oh god I can't imagine working with children day in day out. It's probably a lovely job but not sure I could cope during the TTC journey!
It's hard enough some months to keep a smile on my face infront of family and the children within our family - mainly when your chances for the month are zero - that's my toughest time.
I just wish more and more people would talk about their fertility issues because it's such a lonely experience! Hence why I am on here so much lol xx
Hi, after 15 years of non diagnosis, I was diagnosed a year ago with stage 4 endo, it’s everywhere, they couldn’t even go in on my first lap, so referred me to uclh... I’m finally having a hysterectomy as everything is messed up inside and may even need a Ileostomy as it’s also deeply infiltrated in my bowel, so the answer is yes, my gynaecologist couldn’t do a thing so was sent to the best place and feel like I will be in such good hands... roll on next week and good luck to you for your upcoming op xx
Thank you for sharing your experience, I'm so sorry to read that things are so awful with yourself. It must be unbearable for you - no wonder you are looking forward to surgery!!!
I wish you the best of luck, thanks for your advice xxx
I get what you mean about appreciating it more. Someone once said to me you want your baby not their baby and I guess I carry that around like a mantra now.
I too still carry on like it could happen naturally but know deep down they it won’t I just have to keep living with the hope as I feel if I get to the point where I stop hoping then I won’t have anything left. I told my endo specialist that I diagnosed myself before the drs did which is true I started off thinking I had PCOS then realised that I didn’t have any cysts at that time from an ultrasound drs told me I had ibs then I had something wrong with my stomach they took samples that was clear oh then they told me I might have Celiac disease and it was my food. Then they eventually listened to me and did a laparoscopy where I was finally diagnosed.
Initially I had two blocked tubes and endo in my “obliterated” Pouch of Douglas, connecting my bowel & ovary together then attaching both to my uterus. The unilateral lap unblocked one tube and removed a little through laser surgery but I still suffer badly.
As for my job that is a bit of both. It can be therapy having kids to love to get me through or it can be the worst time of my life with the constant reminder of all I can’t have.
I come in here and pop in and out as I sometimes struggle with the positive even though on the whole they are positive to me and remind me there is a light at the end of this very long and winding tunnel. Keep pushing the drs xxx
So glad you had your diagnosis - it does make things easier I guess if you have a plan or a treatment route to try. I'm hopeful that this will be what is found causing our issues as quite honestly I don't think I can face an unexplained infertility diagnosis.
It sounds as though you have a positive outlook on your job which is really good. You need a coping mechanism or things can be even more difficult.
Thank you for sharing your experiences and please keep in touch for the future!! Xx
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Laparoscopy - NHS or private?
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Urgent- can anyone please help? Surgeon advice
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