They're investigating for endometriosis for me right now. It was a fight to get referred because doctors kept wanting to put my pain down to my fibromyalgia.
I seen a gyno who was incredibly rude but he gave me an injection and hormones. He explained it was like a synthetic menopause which would stop my periods. I was to stay on that for 3 months and then see him again about a laparoscopy.
That was in September. I've now been told he won't see me until April.
I feel like I've been palmed off. I'm so frustrated and upset, I feel like I have no support and no medical staff are taking me seriously.
I don't know where to turn. Has anyone dealt with something like this?
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Harleytje
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Hi there, sorry to hear you’re struggling. My story is very similar. I have Ehlers Danlos syndrome so I get lots of random pains which is why they ignored my suspected endo for so long. I finally got a referral and the doctor gave me those injections (zoladex) and hormones (tibolone). She saw me again for a 3 month follow up mainly due to my incessant nagging 😂 my pain and bleeding was still bad so I got a referral for an internal scan and now awaiting an MRI. I have another follow up in December with a new consultant as I requested a re referral to an endo specialist.
My advice is to voice your concerns to your consultants secretary and insist on a 3 month follow up. I would also insist on further investigations as you can only have 6 months of zoladex so you will need a long term plan. I would also research endo specialists in your area and request a re referral for a second opinion (you can do this through your GP). What area do you live in?
It’s a long battle and sadly requires you to constantly badger them until they do something. I call the consultants secretary at least once a week but have been told to call everyday if I’m not happy with the treatment. It annoys them and makes them want to get to the bottom quickly to make you go away 😂
It's relieving to know at least someone is having a similar experience. It gets so isolating dealing with multiple issues at once! I spoke to my consultants secretary and voiced my concerns about having to wait seven months for my next appointment. I live in Scotland and I've just moved to a new area so I'm yet to meet my new GP so hopefully they don't mind my constant pestering. I want to get to the bottom of the problem, not just keep trying temporary fixes, you know?
I didn't know about the 6 months of Zoladex, is there a specific reason you can't take it for longer? My gyno didn't give me any information about it, just gave me the injection and said he'd see me in 3 months and now it's all changed!
Always here if you need a chat I know all too well how isolating this all is. I’ve just quit my job this week, I’ve never been unemployed in my life but being ill is a full time job in itself! Unfortunately you really do just have to keep pestering until you get the answers you deserve. I hate temporary fixes, I’m on so many highly addictive painkillers then the next GP I see tells me I shouldn’t be on all these painkillers at my age! It’s a mine field but I’m here if you ever need to vent ❤️
I’m not sure why it’s 6 months, I know that some people have been on it longer but they recommend it in 6 month bouts and it is absolutely not a long term fix, they will never keep you on it. It’s frustrating because I’ve been ‘treated’ to a nice pain free 6 months but now I’m stressed about how they plan to fix the pain long term! It’s like they just give you a taste of what normal life can be like!
God yeah, I've had to give up so much to deal with my health I wish the doctors understood what it was like! I'm going to speak to my new GP tomorrow and ask them what they recommend doing. Thankfully I've found a local disability charity so I can hopefully ask them what's the best way to navigate the NHS minefield of treatment. I'm already on 30mg of codeine and I'm only in my 20's! Fingers crossed I get some answers soon.
Oh no, sorry to hear that you've been treated horribly.
It sounds like your gynae consultant isn't an endo specialist so wouldn't know what to look out for. You can find a list of BSGE registered centers and specialists under the BSGE website (google BSGE)
The first thing is probably to go back to your GP and ask to be referred to an endo specialist - under the NICE guidelines (google NICE Endometriosis), it says a laparoscpy is needed to confirm endometriosis and excision surgery consider to effectively remove and treat endo.
Unfortunately general gynae aren't really sure what to do with endo therefore they just give us pills. Any hormones may help with endo symptoms but they will only slow endo growth so eventually excision surgery is required. Hormones are an effective treatment and do help some women; they did with me for quite a few years.
If you have a little money saved you could see a private endo specialist - they're about £200 for a consultation but they can then put you on their own NHS waiting list (so the op doesn't cost); it may not speed up the lap but it helps to know you will be seen by the same endo specialist.
Thanks so much for the info! I've been afraid to do too much research into endometriosis stuff in case I freak myself out to be honest, but I guess it might be better to do a load of research and then keep pushing for treatment. My fear is they just keep giving me pill and then by the time they do the laparoscopy, if it is endo then it'll have gotten worse in the time I'm kept waiting, which sounds dramatic but I can't help but worry!
I've also had to take time off uni and work because of my health, so I don't have any savings for private, as much as I'd like to go that route.
I have found a really useful book online, from Amazon, it has all the info / advice / treatment / side effects / pros and cons / case studies / consultations / diary ideas / alternative therapies. I think it's brilliant not only for endo but just a good overall guide for us women and our problems!
Living Well with Endometriosis: What Your Doctor Doesn't Tell You...That You Need to Know by Kerry-Ann Morris
Check out the members search on here for Lindle
It's good if you know more about what you want done treatment-wise and you know how you should go about, being proactive as then you can push for which doctors you want investigating you and how you want to be treated. Just remember it's your body so you know somethings not right, endo or not you still need to know what wrong. Keep pushing xx
Oh those are brilliant resources, thank you! It's good to know I'm right for pushing, when I first brought it up to my GP she thought it was just from a two minute google search and it took me crying for her to do anything about it and take me seriously! Keeping my fingers and toes crossed x
Unfortunately you can't get a referral to a BSGE centre unless there is evidence of severe disease. Otherwise the guidelines require that you are referred to a consultant in secondary care with a 'special interest' in endo and 'expertise' in diagnosing and treating it. If there is evidence of severe disease from symptoms/scan/previous surgery then referral would be to tertiary care (a specialist centre). Are you in England?
You can get referred to a specialist rather than a center, severity of the disease doesn't make a difference as the NICE guidelines say you must be seen by an endo specialist. The BSGE centers are just the main point for where the certified surgeons work. My specialist doesn't work at one of those, he has his own practice and works at the general hospital under an NHS endometriosis unit. So to see the best ones they'll be registered and certified as BSGE surgeons. Check out the article posted by the UK charity that hosts this page (see page 2):
Severity of the disease cannot be measured by symptoms as we can have a little endo and a lot of symptoms, or lots of endo and little symptoms. A laparoscopy by an endo specialist needs to be carried out to see the extent of the endo. Most endo specialists will have BSGE certification, make sense!
You can be referred by a GP to anyone as the NHS has a "freedom to choose" which basically means we can choose whom we want to see; it does mean some degree of pushing from us though as some specialists won't be available for ages or the GP hasn't referred to them before.
Things are even more in your favour if you're not happy with your general gynae referral; shouldn't happen for endo as general gynae aren't specialised enough to know what to look for or keep up with current literature as to treatment / surgical methods etc.
The user Lindle has helped me a lot along my path of research! She posts lots of informative information on here and has a facebook group xx
There are differences in treatment pathways depending on severity of disease and where you are in the UK.
In England we have NHS Choices but not in the devolved boards, so in Scotland that doesn't apply. In England treatment of non-severe endo is treated in secondary care by gynaecologists with a special interest in endo who have done additional training in endo in addition to their basic ob/gyn training. This may be one of two ATSMs in their final years but that doesn't guarantee they have gone on to treat endo as a special interest. The best indicator is those who have a sub-specialism in Reproductive Medicine as that includes endo in depth. There are many endo specialists with this sub specialism who don't work in the BSGE accredited centres. Such treatment is in secondary care gynecologist departments and this is commissioned locally by CCGs. These same training requirements also apply in the devolved boards with commissioning according to their protocols.
Severe endo (stages 3/4/RV endo) or non-severe endo that has not responded to treatments in gynaecology departments must be treated in tertiary specialist centres. In England this is commissioned centrally by NHS England and not local CCGs. These surgeons must have done advanced excision training such as the ATSM called ALAP. You will find this from page 34 here:
Many of the surgeons in specialists centres are also sub-specialists in Reproductive Medicine who have gone on to the more advanced level of training required in centres. There are criteria to be met for referrals to centres based on stage and this is confirmed in the NHS England treatment specification for treatment of severe endo as below:
I'm in Scotland. I haven't even had an ultrasound yet to check that for signs, just given the medication and left waiting. My symptoms included 21+ days of heavy bleeding and pain so extreme that morphine didn't even help. It was excruciating.
An ultrasound won't always show up endo, it can if the endo is thick enough; it's good for checking the position of organs and any adhesions (organs sticking to each other) so it's good for laparoscopy preparation but don't be disheartened if they ultrasound is all clear.
Unfortunately as you are in Scotland you don't have NHS Choices (this is written into the NHS Constitution for England only) and have to rely on doctors applying the NICE guideline which does apply there. You are suspected of having endo so that is the first hurdle but must only be treated by a consultant in secondary care with a special interest in endo and not a general gynaecologist. The injections you have been given are called GnRH agonists and are no longer recommended in the NICE guideline as a routine treatment for endo. I don't know how old you are but you mention uni so please be aware they mustn't be given under 23 years of age in any case as your bone density will not have reached its maximum. The ESHRE guideline confirms this below at page 26 below:
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Bowel stuck to uterus
Stuck
Feeling lost
Still waiting
Feeling lost and confused 
