To give a little background I have suffered painful periods for about ten years. They have become increasingly worse and make me vomit, exhausted to the point that I can hardly stay awake and have to sleep at the earliest opportunity, they affect my bowels, I get clotting and I get excruciating stabbing pain in my ovaries (particularly the left - I know exactly which is ovulating!). The ultra strong painkillers that I was prescribed don't work. I have spotting for about a week before and often my tampons are saturated with water (sometimes with hardly any blood at all). I also suffer hypothyroidism and vitamin D deficiency so some things are hard to separate from each other. I have water retention on my belly all the time but during my period I literally look pregnant and can hardly eat because I have this full feeling like something is sat on top of my stomach (plus I'm scared that I'll be sick). I suffer pain in my back hips and knees - I have this frequently but I'm sure it's worse during. My mother had endometriosis and a lot of my symptoms are like hers. For the most part gps don't listen, my last one did and was about to refer me but I have since moved house and now need to sign up in Solihull as opposed to Birmingham. I have had a scan (not internal) and they found nothing. Apparently my ovaries and womb all look healthy. I know that scans don't detect endometriosis. I also can't get pregnant - ever aspect of my life is affected and dictated by my menstrual cycle! Really, I'm looking for advice. I have private health cover through my work place and wondered if anyone could recommend a good gynaecologist nearby who specialises in endometriosis (through private message.)
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hellybaybee
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I have just gone private and it is well worth it. Check out BSGE centres here as they are Endometriosis specialist centres. Its also worth hopping on endo revisited Facebook group for personal recommendation. I would avoid general gynaecologists.
It shouldn't be necessary to go private. With these symptoms your GP should refer you to a gynaecologist. Have you mentioned endometriosis to your GP and that your mum had it? X
Hi, yes, one said it didn't run in families (which, from my research, isn't true). My GP was going to refer me but I recently moved out of the area so she couldn't as it took me out of the Birmingham remit. What worries me is that I will be 34 next birthday and my mother had to have a hysterectomy at 40 and was told endometriosis was all over her internal organs. She was so unwell with it and was in hospital for a month and I don't want that to be me. They told her it was a Miracle that she had any children let alone 2. I kind of accept that I probably can't have any. I agree that it shouldn't be necessary, but I think with all the budget cuts, it appears (at least to me) that women's services suffer most
With such serious Endo, people need to be referred specifically to 'BSGE Centres', not just any general gynaecologist.
These are specific Endo clinics, with endo-gynae surgeons specialised in finding, identifying and then removing all forms of Endo - and with endo/gynae-related gut/abdomen and urinary etc specialists on hand, if needed.
GPs have a specific protocol that they are supposed to follow to refer serious Endo sufferers, but many don't seem to know of it or use it. We need to publicise 'BSGE Centres' on here, but not name specific centres or medics, as 'Endo UKs' charitable status can be affected.
Hellybaybee doesn't say she has a diagnosis of endo yet ??
Have I misunderstood?
in reply to
No, the OP says she hasn't had a referral or official diagnosis yet so she doesn't know if she has it or the severity.
in reply to
Thanks, that was my reading of the OP too, but then with mention of severe endo I got confused! :/
I agree with the importance of highlighting the BSGE centres, I have Stage 4 endo and have been one of the lucky ones to be treated in a BSGE centre from diagnosis onwards. X
Your right! They keep skirting around it when I go to the doctors. My last one was good and she listened but I have to go to a new one now so I'm waiting to see what happens with them.
If you have private health insurance. It is much faster to go private and GP generally doesn't mind refer you privately. As Starry stated find the appropriate BSGE surgeon, then contact the surgeon's secretary re private referral and make sure is approved by your insurance . Once you know who you want to see just inform the GP on these details.
I also would book the private consultation straight after your GP appointment. This will move things swiftly. Your insurance company may try to make you go through 'open referral ' route. So they nominate the consultant just refuse and let them know the one you want.
I want privately to King Edward VII in London by a BSGE surgeon. The whole experience is extremely efficient and professional. I would paid privately if I didn't have insurance as I found the whole process is world class.
I'm glad you told me as I spoke to my insurance company and open referral was exactly what they asked for! London is probably okay for me, my brother lives in Surrey.
Hey there, sorry to hear about your pain 😞 I went private in the end as had private insurance through work. My doctor did a letter and then I asked for the local private hospital through my insurance and they allocated me a private gynaecologist. However after a couple of visits and also through help in this forum I did some research online and found a private consultant who specialised in endometriosis and also other female issues and I called her secretary and got an appointment with her. I checked with my insurance provider that she was registered with them (as some are registered under different providers) and thankfully she was and I swapped across to her. It is worthwhile doing some research online and reading about the surgeons - and ensuring they are with the BGSE because I found a significant difference in treatment options! It's quicker to be treated going private so if you have the option I would highly highly recommend it. Good luck xxx
I would agree with the others in that you need to be very careful about which surgeon you choose - don't assume that because the treatment is private, all the surgeons are superior, because this is not the case. I had NHS funded surgery in a private hospital back in January and had a horrendous experience, now being seen at an NHS bsge centre and things are far better. You need a bsge accredited endo specialist. Stellauk and I have the same consultant (I think) though I am seeing him through the NHS and he is London based. I have already had one surgery with him and will be having a second in March and would recommend him.
Please be aware though that if you don't have insurance, endo surgery can get terrifyingly expensive very quickly and that not all insurance policies cover the full cost of the surgery so you may end up with a shortfall which you would have to cover yourself.
No, I don't assume it's superior and I know it depends on the doctor. What I do assume is that it will be quicker and that I won't have to keep jumping through hoops with my gp like a performing seal as I have done for the past ten plus years. That's why I am looking on here for a recommended doctor.
Unfortunately we aren't allowed to name specific doctors on here, we can only try and point you in the right direction. Hope you are able to get help soon.
You can get recommendations on the endo revisted fb page. I was seen very quickly using my insurance about 5 weeks to lap from first appointment and definitely received better treatment on finding a BSGE centre.
Brilliant thank you! Had no idea about bsge centres until I came on here! The women's hospital in Birmingham actually is one and that's where my mom went. They were very good though that was 20 years ago (I used to work there as a cleaner when I did my a levels!)
As others have said, it's more important that you are seen in a BSGE centre than by a private consultant. I have had excellent treatment on the NHS in a BSGE centre. As others have said, private won't necessarily mean superior although it may be quicker (although my NHS treatment moved very quickly but this may have been because ovarian cancer was suspected initially). In my opinion the first step is to get a diagnosis, ideally by seeing a gynaecologist in a BSGE specialist centre. Good luck X
I live very near you, if you'd like to PM me I can give you more details. I have just had private treatment, paid for on the NHS at the Solihull Spire and can't speak highly enough of the consultant
Just to add, it is a little slower than private, but personally I wouldn't pay having experienced this type of care from a surgeon I have known for years who is an expert in the field. I saw the consultant on Nov 21st and had surgery on Dec 12th to give you an idea of the time scale. I hope that helps, feel free to message me x
I wouldn't pay if I wasn't covered by work. I have been fobbed off for ten plus years and, as with my thyroid problems, NHS did nothing until I asked to be referred to a private specialist then they were happy to do a referral and I was diagnosed. I think it's quicker to be seen and have your diagnosis too - it's the whole package. As I have to move doctor, I really don't want to have to go through all of this again. It's really damaging my life (which sounds dramatic but it's all aspects). It just strikes me that these are things that either solely or predominantly affect women and yet these are the very things that are neglected. it's infuriating really and I don't think that anyone should have to feel that this is their only option. It's been bad since I was at school but then you're told "your too young, take the pill" what sort of nonesense is that really? I know the pill is meant to help but I don't like the way it messes with your hormones and I already have one set to try and balance without imbalancing another. Any way that's my rant on the subject thanks for your help, I do appreciate it - I'll send you a message 😊
Hi Hellbaybee, I would be careful though. There was a post on here - I think same day as your initial post - where someone paid to see a BSGE consultant, but then discovered that the team she was referred to for a laparoscopy and possible excision was still not BSGE.
Check it out, and apologies I can't remember the exact who and when.
Also apologies that I wrote initially (somewhere above), assuming you had a diagnosis. From everything you described it seemed so obvious, and it annoys me so much when GPs don't do these referrals, when they should know the protocol.
NB a general ultrasound will not necessarily show endo, but a transvaginal one can show certain types.
I do hope you get some resolution, and soon. Take care
The person had only paid for an initial consultation but went back to NHS so as not to pay for the surgery which is likely why the surgeon was then not who had been hoped.
Second this, and just replied to your PM Hellbaybee I think we've all been messed about on the NHS at one time or other, but I got the whole package on the NHS after years of finding the right surgeon. Agree with you on the scan front, I have had endo suggested on an ultrasound, but this was by a specialist sonographer who knew how to spot the signs of it, apparently most don't and can't spot it. Most of my other scans it didn't show at all, but did a couple of months later when they operate.
I'm not against private treatment, I just think you can get the same care on the NHS in this case (I've pm'd you about it) and I think you're entitled to it after all they put you through. Your GP has no right to stop you, it is your right to 'choose and book', I'm lucky to have a fantastic GP who goes by my research and she usually records my experiences to pass on to patients in a similar boat to me. So she will refer me anywhere, but so should yours, they are far too quick to fob women off, we are taught to believe that 'period pain' is normal.
I hope you get somewhere soon, please look into what I said I honestly don't think you'll regret it and I only have your interests at heart. I'm not trying to be a pro-NHS advocate because I've had many bad experiences with them, not just with endo, and I know they mess up and can put you through hell. This time will be different for you, I feel it especially as you just happen to have moved to the right area (in my opinion!)
I couldn't help but notice your response on this post. I feel like I am going through a similar situation. I am confused whether or not to get treatment via the NHS or private. I am from the edgbaston area.. so not far from Solihull.
I am 23, and my diagnosis of Endo has been ongoing and I feel like the doctors are doing very little. Currently I am on the pill and I hVe been informed that a cyst on my ovary has grown to 9cm in diameter ... yet I have to wait till august for another scan and then another few months for treatment. I am really worried and have considered private care but not sure where to go? I noticed you're from Solihull, could you kindly shed any info or gyaidance please.
Hi there, just saw your reply and thought I'd add I'm still under Solihull and it's been a life saver for me the past few months. If I was you I'd try and get a referral to the Spire on the NHS, it doesn't really take much longer than private. If you want to chat to me privately I can tell you my experience x
Hi how did you go about getting referred to spire & what was the wait times I seriously am going mad with the pain & tablets I'm taking to try & help 😪
Hi, I know this wasn't addressed to me but I went to Birmingham women's hospital in the end because they're a bsge centre. You have to jump through a few hoops with doctors because I think that they have a set process with these things (that's how it seemed to me). Are you taking trans and mefa acid? If so go back and tell them that it's not working and that you want a referral to a gynaecologist. They will probably give you a scan and then refer you. Persistence is the key.
Oh also, it's no picnic then - wait times are annoying but Not a lot you can do about that. I recently had an internal scan and they found a small fibroid, cysts and fluid in my right ovary (which suggests that it probably is endometriosis from what I've read). My next appointment is either 15th may or 15th June (need to double check). On the plus side though, it starts to feel like something's getting done.
Hi thanks I've had a referral made back in Feb also had my scan & cysts were found but even through the gp has emailed to get my app rushed through I'm still waiting so was consideringgoing private x
I couldn't help but notice your response on this post. I feel like I am going through a similar situation. I am confused whether or not to get treatment via the NHS or private. I am from the edgbaston area.. so not far from Solihull.
I am 23, and my diagnosis of Endo has been ongoing and I feel like the doctors are doing very little. Currently I am on the pill and I hVe been informed that a cyst on my ovary has grown to 9cm in diameter ... yet I have to wait till august for another scan and then another few months for treatment. I am really worried and have considered private care but not sure where to go? I noticed you're from Solihull, could you kindly shed any info or gyaidance please.
Hi, seems a long time to wait even on NHS, I had a scan in a couple of weeks! Have you asked them to refer you to a gynaecologist? If you have and they haven't sent you I would ask again and be firm. I would go to Birmingham women's hospital, they are a bsge centre and I'm sure they've won awards 🤔. GPs seem to follow a process with this but it looks like you have done everything I had before being seen so I don't understand why you need another scan. I can send you the name of the private dr I was recommended to - he sounds really good
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