So I'm at a lose as to what to do next and I'm feeling really down about it all. I had a lap this year with a general gynea to see if I could get a diagnosis but instead I was left feeling even more confusing. They found my ovary was stuck in the wrong place and no endo. I asked them if they had any idea what caused it to get stuck . I was then told it could be endometriosis or a bad infection but because they didn't find any they don't know.
I have been back to my GP since and they admitted they don't know what els they can do. The thing I had done was a colonoscopy which was so painful I never want to have another one again and luckily it was all clear anyway.
I just don't know what do next I have changed my diet and seen a dietion that has helped a bit. I'm on the pill and I take pain killers. But I just want to know what's goingon with my body.
I'm so desperate I'm thinking of chipping into my savings which I have been putting money away since I was a child for a business idea and spending it on health care instead. Because I'm unwell I'm not going be able to spend that money on my dream anyway. Not until I'm feeling better.
Have any of you gone private and was it helpful?
My symptoms include extreme tiredness, painful periods, pain in my tummy, hips legs and back, extremely painful sex along with pain and heavy bleeding after, bloating, blood in poo just before I have a period, trapped wind, joint pain, needing to wee all the time and yeast infections all the time along with UTI'S.
Every time I go back to my Dr I feel like a hypochondriac because I just get told to take pain killers and nothing was found in my lap so I must be fine. I also have PCOS as well and I get told they don't cause that much pain so just take pain killers and rest....
The only symptoms that I have that match up to PCOS is that my periods are out of wack and extremely heavy if I don't take the pill and tiredness. I'm not overweight, I don't have accessive hair growth or oily skin.
Sorry for all the writing I'm just so lost and I've given up hope. I know it's hard for all of us and I send big hugs to you all. It's such a horrible thing to have to put up with. Xxx
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I am leaning towards that idea I'm just warried they are going to turn round and say they don't know what to do like my other Drs have said and then it be a waste. But if they can do something about it it would be worth more than money it's self. X
I did this!! Got diagnosed at 21 but got symptoms at 14 and it only got worse. Got to the point my drs we’re giving me monthly std checks (I was a virgin) anyway... I went private and it was the best thing I spent my money on. She knew instantly I had endo but needed to do surgery to see, booked in next day, diagnosed and now back with the nhs. Had a few surgeries on the nhs and still making progress but it’s damn slow that’s for sure. Can’t recommens going private enough for a diagnosis
Hi, sorry to hear you're having such a hard time with this ☹️ if you have the money I would say to have a private consultation too. I've seen a couple of private consultants and they just tend to give a lot more time and attention than the NHS ones do. Usually you'll get half an hour or an hour and they'll go through everything with you - symptoms, options etc. I doubt they would just wave you away like the other doctors have. X
I hope you don't mind me asking how much does it cost to have a consultation privately? Just to have an idea. It definitely seems to be a popular option for endo sufferers. Seems sad how it's that way and so many NHS Drs don't seem to have the time for it. X
I can't remember exactly but I think it was around the £200 mark. If you find a consultant you like online they usually have a pricelist on the website or you can call up and ask 😊 and you should be able to find out how much a lap would cost too so if you decide to have that you'll know up front. Yeah it is frustrating, I've not had a lot of luck with NHS doctors myself but I guess it's hard when you only get a 10min or so appointment 😣 X
Really sorry to hear you're suffering so much and no one seems to be helping. From what you've said, it sounds like endo to me, but I'm not a medic. I'd also say a colonoscopy wouldn't diagnose endo either, that's a gi procedure to check the colon for any problems.
If you have the money and you'd rather go that route, then go private, but there's no guarantee that private doc will be anymore useful than NHS, they may have more time to listen, but whether they do or not is another matter - many NHS consultants do some private work as well so you could end up seeing the consultant you've already seen, just in a different setting. I'd suggest finding out where your nearest endo centre is first and pushing your GP for a referral to an Endo specialist, check the bsge website for where these centres are, or use endometriosis UK site to link to it.
Hey, I went privately. I found they listened so much more (you have an hour appointment or longer if you need it). They are ,ore thorough with their work for example under the NHS ablation or laser is standard for removal of endo - quicker but endo recurs faster, private is really the only place that does excision - takes longer but recurrence is lessened. It's a difference of cost vs time. You can go all private (consultations and operations) but most private specialists do work with the NHS so could put you on their waiting list; obviously you're then subject to the usual NHS op procedures and restrictions and waiting times - diagnostic in one lap and removal of endo in another while on a waiting list - private you choose when you want your op anywhere from two weeks away to three / four months - even down to the day so you can plan rather than wait.
Have a read of my experience of it all, to see if it answers some of your questions
"All this effort does pay off - my story - hope it helps !"
It's on my profile page or search under this site.
If you or your partner works, most workplaces offer health insurance and can add on partners (even if not married) which you can use for these things.You can often talk to individual private hospitals or centers; they often have payment plans or can suggest your own private insurance. Check out BUPA for an idea of costs.
Happy to answer questions on how to go about it all, costing, timeframes, etc.
How much would it roughly to actually have the diagnostic lap? Also if I was to go private would they have to do all the same tests my GP has already done like blood tests and ultrasound scans etc? Or would they just be able to go straight into other tests?
Thank you that would be so helpful I'll have a read. Xx
It's also a shame because me and my other half are both self employed. It's a shame because I was employed but because of all the pain and problems I have I got singed off because the work was just too much. X
I had the diagnostic lap and excision of endo with one surgeon including hysteroscopy and biopsies, and external and internal visual examination. The fees are split out into the consultant fees (appointments), hospital feel (staying, care, meals, prescriptions and room), doctors fees (surgical operation) and anaesthetist fees (anaesthetist for operation). Mine cost quite a bit more obviously then. It was about £125 to £200 for the consultation (initial is the higher amount for mine and then the others were the lower amount). The hospital fees were about £1000, the surgeon was about £1000, and the anaesthetist about £500, then the additional tests; biopsies £300, so about £3000. The post op with the specialist at 2 weeks is included and costs about £150. My insurance covers it all. Any surgery queries, prescriptions, letters to work / GP, extension on sick leave are included. I know it's expensive but even if I didn't have healthcare / moved to another country ; I'll save for it or look up payment plans.
You'll need an initial consultation, they may be able to use your GP blood tests as my specialist requested me to have them done and said that I can just have them done with my GP as it won't cost plus it's all the same. Ultrasounds vary on what's being looked at; the specialist may be okay with the ones at your GP. All your notes will be requested and looked at. Payment plans are offered by most private centers, and you can get health insurance yourself (google, works like pet insurance where over a certain amount is settled directly with the center) - I'd definitely get in contact or look up each hospital / center you want to go to and ask them the insurance stuff - you can't be the only person in your situation! They may tell you which insurance companies they work with - that can sometimes mean a discount and all bills are settled directly so you don't need to pay upfront and then wait for reimbursement.
You may find that privately they'll want to go straight for excision of any endo they find with diagnostic and do biopsies - this means you can be on the path to recovery quicker, plus excision is the best for removing endo as the reoccurrence is lower, and a reduction in symptoms for longer. They don't tend to want to just patch up with hormones.
Thank you! I may have to pm you at some point. I've just been to see a different Dr at my surgery as I thaught it would be worth a go. He's printed out the notes from this year and he's said to have a look through before I decide on having another lap because he said it could do more harm than good. I've also been given some new medication to try for when the pain gets to much and I can't sleep. At the end of the day I just want to know what's going on with my body and to be pain free without being drugged up on pain killers all the time. Xx
The laps definitely help as they can see what's going on and remove the endo they find, plus unstick organs. I can't see how it could do more harm; if you have endo it'll just get worse, so it's best to see what's going on sooner, in my opinion. Yes it can regrow but at least you'd know what your normal is and have a bit of time with reduced symptoms to have your life back, then if it gets worse again you'll have researched what you want to do next. At the moment the doctors are just going to suggest medication as they are not specialists so cannot suggest surgery; they can only do what they know and are allowed to do hence painkillers and hormones. These only help for a period of time. For some women it does help with symptoms and they're fine with them; it helped me for a period of time.
I went private in order to be listened to and have subsequently been diagnosed with endometriosis. Like you I previously had a lap that showed 'nothing' by a general gynecologist and a colonoscopy showing nothing. Why don't you do some online research for a gynecologist who specializes in endometriosis (I found one who does nhs work in a BSGC approved endometriosis unit), pay to see them privately and if they suggest another surgery ask them to refer you back to the NHS? Hope you get some help soon! The frustration can almost seem as bad as the pain at times!
I saw a gynae - privately - once my endo recurred, not long after an NHS 'general' lap' and some removal. In my case, the lovely Gynae just arranged for me to have a mirena fitted under ga, in the NHS - something I would not have got via my GPs. I was fine after that.
Sadly a lot of general laps do not seem to be being as thorough as they should be. Anything they cannot, or dare not, remove … or any endo they cannot identify, or any areas they may have missed, should be referred on to a BSGC Centre, but often it doesn't seem to happen. Either the less specialist initial gynaes don't recognise what they are seeing, or don't even know what they are supposed to do, or hedge their bets 'cos of the cost, waiting lists etc. There is an official protocol for dealing with Endo, your GP should have a copy, and it is supposed to be followed.
Hope this helps, and talk to the advisors here at Endo Uk - see links. They are a charity and should help and know the paths to follow. Also, there may be a local 'Endo UK' Group in your area: I'm in Devon and there is one in Totnes, as well as others.
Hi, i had a lap in Oct on NHS and have severe endo which couldnt be removed at the time, i am tired of waiting for my follow up appointment (not until 2019) and am going private for an intital consultation just to understand the results and find out how to manage my pain- mines approx £200 but is covered though my work private health care. If you search for a local one, call them up for a quote beforehand, and check if bloods, xrays etc will be extra and at what cost before you agree to any so you dont get hit with an unexpected bill. Do some research and find a consultant thats based at a good to outstanding rated private hospital, mine was recommended to me by a few people.
Also, do you see the same GP each time? I have changed so many times over the years to different GPs, as soon as they told me "its in your head" i struck them off and went to see a different one at the practice i go to. x
I have tried every Dr at my practice apart from one which I'm going to try and get an appointment with because a friend has just told me he's the best one there. The only problem with that is he's always booked up and hard to get. Xx
The good ones always get booked up quick dont they! Try giving your surgery a call as soon as it opens and see if that Dr has any cancellations on the day you can take. And worth asking reception if they know what day that Dr releases his hours for the week, sometimes they are helpful and will tell you the best day / time to phone to get booked in with him especially if you tell them you are desperate to see him. Good luck getting an appointment with him! x
So sorry you are still suffering. If i would have had savings put away i wouldve gone private. I was lucky as i got referred toa great gyne consultant who did my lap and found the endo first time. She removed it and gave me a full mot in there, but i was lucky i got her. I would suggest either changing your dr as they dont sound like they really know much about where to go next, or bite the bullet and go private. You will be seen very quickly going private too. Good luck x
Thank you for your reply. After having a think about it I'm going to try one more different Dr and if that's no help I'm going to definitely go private. That's great you had a good one! It's a shame so many Drs have little knowledge on it. I don't mind paying if it means I'll know what's going on with my body and be on top of the pain. I would do anything to be normal and pain free. X
I totally know what you mean. Ive had this since i started my period at age 11,and wouldve found the money if id had to. Seen many drs, gp’s and at hospital and all were crap. It took for a nurse to suggest it may be endo and to have a laparoscopy for me to realise what it was finally! Not one dr even suggested it. So i looked into it,found out it ran in my family and went back to the dr and demanded a lap. It took around a year from then to get it done on the nhs and i was getting desperate by this point. But my consultant did everything i wanted her too she was fab. If you have a look at hospitals in your area you can look up the consultants and specialists and tell your gp who you want to be referred to. You do have a choice, but you have to be really demading about it so just march on in there and tell them what you need them to do x
That's really interesting I've heard of it being a genetic problem before I have had a look as well. I have found out that my great grandmother had very similar problems but no one got down to the problem. She also had lots of miscarriages. But she's the only one in my family the same as me.
I have just been to see the different GP and he has pretty much told me that it's something I have to learn to manage. He told me if I have another lap it could make it worse and that he would personally leave it. He's given me all the notes from other Drs over this year and said to just have a look. He's also given me a different lot of medication to help me sleep when the pain is bad. I also didn't really have enough time to explain all my problems because there was little time to talk.
Just feel a little frustrated not having any answers and not knowing what my body is doing and having the thaught of living with this problem for the rest of my life.
missed reading this before I replied, good that gp has given you meds to help. In some ways agree about the lap but think it's wrong they've said you just have to live with it! Follow what I've said re. being assertive with gp and saying that you want to have a second opinion from an endometriosis specialist - just go in say I'm still having trouble, I'm not happy, I feel I'm not being listened to and for peace of mind need to see a specialist.
An endo specialist may even be able to take a look at the photos taken with your last lap or a scan and be able to tell without doing anything further, or be able to recommend a treatment combination that your gp has little experience with i.e. things like prostap and other injectables are generally prescribed at consultant level.
If you already have all documentation in relation to scans, procedures etc that is one less thing to worry about.
Re. what he's said about another lap making things worse - every time you go on and have an operation scar tissue is created and this can, similarly to endo, bind organs together and cause you pain long term. I have has 4 laparoscopies (2 diagnostic, 2 major), 1 caesarean and gall bladder removal. Consultant is now of the opinion that laparoscopy to excise more endo is a waste of time and will do more harm than good, so my only surgical option is to have hysterectomy. Just bear in mind they won't keep doing laparoscopies forever and a day, consider your age and what your long term plans are that sort of thing and use up your surgery wisely x
I also completely agree with him about surgery and it all makes more sense. He was more helpful than the hospital at explaining it all.
But the problem is having to live with something that is causing me so much pain and I don't even know why. also taking medication for something I don't even know what I'm treating.
Fingers crossed what he has given me will help, I had to pretty much ask him for something that will help eas symptoms because I said I can't live my life like this anymore.
He did say to come back once I've had a think and if the medication doesn't help. I did tell him even just talking to specialist would help. As all I want to know is what's causing all of this and to be able to mange or treat it so I can live a normal life.
It's also hard explaining to work as to why I can't come in if I'm having a bad painful day because I can't tell them why. So it would be so helpful to just be able to explain and say it's because of this condition. Instead of just saying I'm ill and in alot of pain and I don't know why.
Thank you for your help I'll give the medication a bit of time and then I'll go back again because even if the medication does help I would still like to know why I am getting all of theys symptoms. So that would be very helpful if they could do more scans ect. Xx
Sounds like a plan, and yes you are totally right having a diagnosis takes a weight off and makes it easier dealing with work etc. I would give it 2 months and then go back and get the ball rolling, even if it does work you have the right to have this investigated to get your answers. Hope you feel better soon x
I totally agree, talking to an endo specialist may give you the answers you need. Its awful not having a proper diagnosis. I would push that with your dr, i dont see why you couldnt be referred since you have explored every other option at this point.
Really hope you get some answers. Being told just to learn to live with it when it destroys your quality of life isnt really good enough. My dr didnt take it seriously until i told her i was having problems getting pregnant with my second, and i still am but only had my lap a couple of weeks ago. Then when i demanded a lap she had to refer me.
At least if you have some answers you may be able to accept it at the very least x
Here is the link to the bsge website bsge.org.uk/centre/ have a look and see if there is an endo centre/doctor on the list working near you.
1. Ask your gp to refer you to that doctor via NHS - say I am not happy with the conclusion from general gynae, I would like to be referred to an endometriosis specialist incase something was missed - give them range of names or name of the exact doctor you'd like. They will do the referral.
--> after you have been referred by gp to doc via NHS, write a letter to the practice manager saying you are considering seeing someone privately in relation to your gynae problems. Say that you would like your medical history in relation to gynae and gastro investigation ie. results from blood tests, scans, colonoscopy, laparoscopy etc. (it may take some time to get - say you need it urgently)
2. Go back to gp, say that you've thought about it and would like to speed things up and have a private consultation - the gp has to provide a letter for the consultant to see you privately - the consultation will set you back about £150 - £200 and is worth it
(if the doctor does NHS work at the same hospital you were treated at by general gynaecologist they should be able to access your records, however I would recommend bringing copies of anything you have, also request copies of everything in relation to your gynae/gastro history from gp - see above)
3. See the doctor, they may do an ultrasound (internal) which will cost a few more hundred but that will be the height of it (or they could decide to bump you up their list on NHS to do it for free - that's why it's important to get on list for NHS referral say a month beforehand)
4. Something important to bear in mind for private care - most private hospitals do not have an intensive care unit nor the ability to call in another specialist in the event that a surgery becomes more complicated.
- for a diagnostic lap this is fine as all they are doing is looking around but if for excision of more serious disease check the capabilities of the hospital to be able to deal with you if things get more serious prior to handing over your money.
- diagnostic you are looking at 3,500-4,500 depending on where you are it varies a lot.
- for more serious excision 4,500-6,500
5. If you pay the £150-200 for initial consult and tell the doctor you have been referred to him/her by gp on NHS they might just say ok I'll put you on surgery list (again why it's important to get gp to refer you to that person prior to private), in England the wait can be as little as 6-8 months, in Northern Ireland up to 18-24 months, don't know about other regions but I think Scotland is quick too.
6. In the meantime check out endo-resolved website for ideas on treatments and lifestyle hacks to help: consider changing your meds or trying a new treatment, acupuncture and other alternative treatments are listed, endo diet and losing weight can help by lowering the amount of free oestrogen in your body, de-stressing and strengthening your immune system is a good idea too. Lots to keep busy with and take your mind off it.
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I know it's hard for all of us and I send big hugs to you all. It's such a horrible thing to have to put up with. Xxx
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