I am having a follow up scan tomorrow morn of my left Fallopian tube (last month I was rushed to hospital in agony and they found liquid in my tube but missed the cysts and obliterated pouch of Douglas - please see previous post about that). While I was talking to my GP two days ago about this appointment I asked him to refer me to a tertiary endo centre working to BSGE standards which was suggested to me on this site. He turned round and said ‘I’m not the one that refers you, the specialist you saw would need to do that, I’ve never heard of those centres and if she didn’t refer you straight away then your situation can’t be that serious.’ Um...what?! I was so insulted and asked him to just get me another appointment to speak to that same specialist again so I can consult with her about going to one of these centres and how this pain is serious. Also suggested to me from this site was to get hormone and thyroid tests which he said wasn’t necessary and anything you guys tell me in here will always be negative because no one will talk about the positives! I couldn’t believe what he was saying! It took everything for me not to tell him where to go. He said if I didn’t have the coil then they really can’t help me. What should I say and do when I do get to see the specialist again? She was the one who spotted the endo, obliterated pouch of Douglas and immobile ovaries with cysts within seconds; the other hospital which I’ve been going to for 2 yrs missed everything but the tube last month. Can I just call one of these tertiary endo centres myself or do I have to get a referral from the specialist? Feel really lost after speaking to my GP.
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Clairabelle1988
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This is exactly why women are in the situation they are with such long diagnostic delays - the ignorance of so many GPs and unwillingness to even want to find out what they should be doing.
1) Print off the following image - this illustrates the ASRM endo staging (note the reference to an obliterated 'cul-de-sac' in stage 4; this is another term for 'pouch of Douglas) so that is what you have :
'Severe Endometriosis should be treated in specialist centres'
'This is a clinic, which is specifically devoted to endometriosis patients and accepts referral for this named condition. Ideally, it is recorded as such for any respective referrer; whether they be primary or secondary care clinicians.'
3) Then print off the corresponding specification for treatment of severe endo in England that is below.
Highlight all of 1.1 down to 'The definition used here would accord with grade 3 and 4 disease used in the revised American fertility Score.'
and from second para page 2;
'Medical treatment is only of benefit in mild cases.'
and 3.2.1:
'Referral from Primary or secondary care (including detailed clinical information,
investigation results and laparoscopic images/video)'
and 3.2.2 Referral:
'Patients with known severe disease, which has not been adequately treated or has recurred,
are likely to be referred by primary care clinicians'
Show these to the GP and say:
- You have an obliterated pouch of Douglas which is confirmed by the ASRM staging as the severest stage 4.
- The NHS England treatment specification confirms that this must be treated in a BSGE centre and that referral can be by a GP.
- The NHS England treatment specification confirms that medical treatment is inappropriate for severe disease such as he has suggested by way of the coil.
- if you aren't treated in accordance with legal guidelines that requires that you are referred to a centre, you will be contacting the GMC.
Thanks so much! I’m gonna spend today looking through these links and getting familiar with everything. Still fuming with that GP. It’s no wonder women give up fighting with docs trying to get answers then don’t get diagnosed for years! So unfair.
Hi there no advice but I have fluid in my tube, have they said what they’re to do with that? I’m waiting for doctor to ring me about my results but the lady doing ultrasound told me everything she just said she’ll send back to dr about the fluid and see what she wants to do as may give me antibiotics to see if it clears or whatever else she wants to do.
Hiya, so I’m on my way to have the follow up scan. When they initially found it beginning of nov they put me on two lots of antibiotics for two weeks and gave me an injection for pelvic inflammatory disease (made my arm hurt for weeks!). Should find out today if liquid is still there today. They did mention if it’s still there they may have to drain it or remove the tube if I have scarring (previous ectopic) but they weren’t sure if it’s blood or something else. In between then and now I went to another gynaecologist for a second opinion for all the pain etc (she found the endo) and she saw the tube and said it still had liquid in but I shouldn’t worry too much. I’ll post later today with results and hopefully that’ll give you some idea. Take care.
Ah lovely see I don’t have anything like that. they originally assumed it was my bowel but didn’t move when they came back round, but I did need the toilet 😂😂 I’m a little worried if they want to remove mine. Although I do have two children and didn’t plan on more but still a bit worried 😖 hope everything goes well and thanks for updating!
It might help to know which type it is. Have you looked up Hydrosalpinx? That’s when clear liquid is in the tube. You can also get a hematosalpinx (blood) or pyosalpinx (pus). They found blood in my tube, and decided to monitor it. The next time I had a scan, it was back to clear liquid, which is less severe/worrying.
The fluid comes up as different ‘shades’ depending on what it is - so clear fluid should look different to blood on a scan. If the technician wrote it down, your doctor/consultant should be able to find out. Otherwise, if you have another scan (mine are always trans vaginal) you can ask then. X
Regarding the tube, rectovaginal endo such as you have almost always affects the left side with the left ovary and often the tube bound by dense adhesions. This is one of the main causes of a blocked tube as it can't drain so it is part of your overall rectovaginal endo.
I'm so sorry that happened to you. it makes me furious when people in positions of power abuse the people who rely on them. And what does he mean "no one wants to talk about the positives"? its literally a website for people with diseases. Sorry I'm just so mad. My GP is a lot like that. I told her I was suicidal from the pain and was terrified about my future and needed a hysterectomy. She said to me that I wouldn't be able to have kids when I'm already unable to have kids and she knows that. I also asked for a laparoscopy and the Mirena coil and she just kept going "no no no" like a child and refused to give me any explanation or any other solutions apart from more pills.
I'm pretty sure you can call an endometriosis center yourself, I don't think you need to be referred. i found that i could actually call a clinic myself to get the coil, my GP was lying. I've heard many other people say that their GP acted like they couldn't get an appointment without them but its not true. If you do though I'd recommend finding another GP. sadly so many doctors don't take endometriosis seriously. we need to start up some kind of campaign to fight against this.
HiMy original consultant who discovered deep endo referred to the endo specialist directly. Guidelines says a referral to BSGE can be from either primary or secondary care. I think GP’s may prefer secondary care to do it so it doesn’t come out of their budget, but not entirely sure. Have you tried calling or emailing your consultants secretary to see if they can?
So sorry the GP was so bad, don’t let it put you off 🙂
Another update...this is a long one...Had the scan today on my left tube (liquid seems to have drained itself but still painful) and it turns out all the hrs I’ve spent in this particular unit over the past 2 yrs have been pointless. My GP was supposed to send me to the endo unit not the unit I’ve been going to which is early Preg and acute gynaecology. They said today they were never looking for endo and probably wouldn’t have found it anyway and only send the scans to my gp, not all my discussions about my pain, my sisters stage 4 endo and how miserable my life has been. And what I don’t get, even though they’ve known of my pain, family history and cysts, they still didn’t think to communicate this to my GP and suggest referring me to the endo dept??? This is the early Preg and acute gynae unit!! Surely they can put two and two together and we’ve discussed endo so many times!! The lady just said that’s why it takes ages to be found cuz they don’t find it here. Omg!! After the examination I was nearly in tears with pain, a woman in the waiting room asked if I was ok, a lovely stranger whereas the staff couldn’t give a toss.
I also told the doc after my scan how rude and unhelpful my GP was, basically refusing to help if I don’t try the coil. She understood my concerns but warned me that even if I go back to my GP and get referred to an endo clinic they will not give me a laparoscopy before trying some kind of hormonal treatment first. I said no, and that since it’s suspected obliterated POD that means stage 3/4 right of the bat so following the rules I should be sent to the tertiary endo clinic straight away. Doc said it doesn’t work like that and if the hormonal treatment works for pain then they wouldn’t do a laparoscopy anyway! I was stumped. I’m going to message my GP tomorrow and attach the letter from the other hospital stating about the obliterated POD along with the NICE guidelines for endo referral cuz they can not deny me treatment. Their other argument is how can they send me to tertiary clinic when it may be mild endo. I said ‘well open me up then and you’ll know!!!’ They said my scan looked ok today but they also can’t find endo so they completely contradict themselves. The doc said she really thinks I have endo and agrees with the potential diagnosis but kept saying ‘this is just a suspicion, not definite diagnosis and maybe it’s just my cycle that made it look worse than it is? What?! How can the other hospital say obliterated POD if they’re not sure or didn’t see something that’s worth mentioning?!
Some of my friends who have had the coil have had to have it removed due to more pain and excessive bleeding, my sis nearly had a stroke due to some form of hormonal treatment (forgot the name) and I have had similar symptoms when I was on the combined pill (had a blood clot in my neck and had to be in hospital for 3 days, ballooning all over, losing my sight and hearing, temperature rose, so scary). I’ve been on different combined pills, progesterone only pills since I was 15 and it effects me too much emotionally and the cysts keep coming back and pain has worsened over these past two yrs, that’s why my nurse advised me to stay away from any form of contraception; suits some people just not me or my sis. I’m so angry and hope my stubbornness to find an answer will get me through cuz I’m really at my wits end.
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Had lap but endo tissue remains
stage 4 endo, end of the line? hysterectomy or other opt
Lindle knows best - lap completed :)
Endometriosis found but I don't have endometriosis.
