Hello, all. This is my first post, although I've been reading this forum for a little while.
I'm 48 years old, have had breast cancer, and am now trying to get answers for my chronic pain and prolonged bleeding (six-12 weeks on, six-12 weeks off).
I have just moved, so have a new GP. I've had ongoing problems for several years, every endo symptom, plus I have fibroids and ovarian cysts. But because I have a history of breast cancer (three years ago), my new GP has referred me to a rapid access NHS gyno clinic.
Two weeks ago I had an ultrasound, and the radiographer was a trainee and couldn't find my right ovary, and found only one fibroid. I have had five fibroids for more than a decade, but she never saw these or looked after I told her. This took her 20 minutes. She never did find my ovary and her observer didn't bother trying to find it. I was then seen by the gyno who did not do an examination. In fact, she barely looked at me - mainly stared at her computer screen - then said I should have a hysteroscopy for the bleeding. I told her that I had had one two years prior and they suspected endometriosis, and her response was that she also suspects endo, but because of my bleeding they want to do a biopsy to rule out polyps or cancer... which the previous hysteroscopy already showed was clear.
That appointment was less than five minutes long, and based on this and the incomplete scans, I am not confident about her assessment.
I have pain in my bowel, bladder, and upper abdomen, but this was ignored by my NHS gyno - only the bleeding is of interest.
I know a lot can change in the two years since my hysteroscopy, but I feel I'm simply being put through a box-ticking exercise to rule out cancer. I appreciate their attention in that regard, truly, but surely I should have a laparoscopy to check for endometriosis AND whatever else the hysteroscopy would show (including cancer)?
I have made an appointment for a private consultation [edited to comply with our code of conduct] for this week, but am keeping my pre-op appointment just in case he feels I should still keep my hysteroscopy appointment.
Have any of you had your endo diagnosed with a hysteroscopy? From what I have researched, and have seen on this forum - and from what I was told when booking my private consultation - you really need a laparoscopy to diagnose endo.
I know it seems like I'm not giving them a chance, but I have had 10 years of being told to just take ibuprofen, it's menopause and fibroids, but when you can't stand up straight from pain every day, you know they're wrong.
Sorry, I'm rambling. I'm not an indecisive person, but I am feeling confused. Thanks if you've read this far.
TL:DR version: I have a lot of pain, fibroids, cysts, bleeding, and probably endometriosis, but the radiographer couldn't find my ovary or 4/5 of my fibroids and the gyno stared at her computer screen and put me forward for a hysteroscopy for just the bleeding, so I'm going private. Is this wise?
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MrsCherry
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Hi, I can see why you are concerned. Only a laparoscopy can diagnose endo, not hysteroscopy. I imagine they are suggesting a hysteroscopy to check on your fibroids and take a biopsy of the endometrium, given your history. It does make sense as a strategy, although I can understand your frustration if you think endo is the issue. I think they are just trying to rule out the possibility of cancer first, which is the implication of your GPS referral to the rapid access clinic.
Hopefully once that's over, your request for a laparoscopy will be taken seriously. I hope so.
Before you go paying out money for private go back to the GP and tell them that the suspected endo on your last one and ask to be referred to your nearest BSGE centre, you should be able to find your nearest online, you have a right to ask and be treated were you want, they shouldn't say no but you do get some GP's that will say no if that's the case try a different gp and don't give up till you get one to listen, hope this helps x
My hysteroscopy was done at the same time as my laparoscopy, under general. Can they do a hysteroscopy without general? If not, I would just strongly argue that I don't want to go under general twice. You might be able to ring the secretary of the gynae you saw directly, to ask about this.
I think the strategy is sound. The private consultation will hopefully helps with your endometriosis diagnosis and treatment. While hysteoscopy will eliminate the cancer worry. You could always ask the gynaecologist this week should you still keep the NHS appointment.
Do you have private health insurance? The private treatment can mount to a large amount.
Thank you very much for your help and advice! I'm sorry for the slow reply. I've been mulling over your comments.
To answer some of the questions: No, I don't have private insurance. My strategy, as some of you mentioned, is to pay to see the consultant privately, and then wait for him to be available on the NHS. He does both private and NHS, so this will omit further need to go in circles with general gynos, as the past 10 years has been. Thank you for your comments about this. I feel more confident in this approach.
My plan was to go to my NHS pre-op assessment today, then see my private consultant (which is Thursday), then make a decision about whether or not to keep my NHS hysteroscopy appointment (Saturday 5th August) or just wait for it all to be done by the private consultant when he has space available on the NHS.
Well, I had my NHS pre-op today for the hysteroscopy, and it was hopeless. Long story short, they forgot about me, then after two hours I'm told they have to postpone the hysteroscopy. Because I have asthma so need a specialist anaesthetist? So now it's three weeks away. Urgent/cancer concern = three weeks. Good to know. And I've had asthma forever and have never needed to see a specialist - they simply say 'Ah, you have asthma, we'll inject the anaesthetic instead of making you inhale it.' I guess they're just being thorough, but it's very frustrating.
So it's possible my decision has been made for me. I'll update again after my private consultation, as I'm sure someone may be reading this wondering if it's a sensible strategy.
To be clear, I'm not wealthy and I can't really afford the £250 fee - but I also can't afford the pain and missing time off work going round the houses. I think it will be worth it, but I will let you know.
Thanks again. And once again, sorry for such a long message.
P.S. I'm sorry, I didn't realise we weren't supposed to name consultants/hospitals. Thank you to the Admin for editing my comment so it's compliant, and being so nice about it. I'll know for future.
Hope your consultation went well. If it is with the consultant from UCLH you will be in excellent hands. You may need MRI scan privately which can cost a bit!
Thank you, Stella. It went well and I am indeed being put forward for an MRI privately... not really something I can afford, but needs must. Then any surgical procedures after that he'll do for me on the NHS. I don't mind the wait.
I've been advised to keep the NHS hysteroscopy appointment, as he also seemed concerned about the bleeding. Hmm. And here I thought all of us bleeding like crazy was just business as usual.
Glad to hear your consultation went well and finally getting somewhere. When I told him there was bleeding while on Prostrap he did a hysterpscope at the time of the operation. Clearly it is best to eliminate any serious condition.
Do you have to have two staged operations? This is quite common normally with prostrap injections in between. Hope you getting sorted soon.
Hello, Stella. Thank you for replying. I'm glad you got your bleeding looked into at the same time as your other operation. Is the bleeding now under control?
I was hoping for the same, but because they are ruling out cancer, he explained that it's best to do it while the NHS is focused on cancer, and he can meanwhile be researching why I'm in so much pain all the time. The good news is that he didn't feel that my uterus was terribly attached, so any endo is likely to be early stages and/or hidden behind the uterus (which would match my symptoms).
Oh, and your question re: the consultant: no, it's not the same one you mention. Mine is a BSGE consultant in the Midlands, surname initial M.
I only had irregular bleeding while on prostrap which supposed to induce menopause. Glad the consultant has listened to your symptoms and think it is early stages.
I had some symptoms for years but nothing too bad. I was recently diagnosed as the endometriosis is effecting ureter and the kidney. It turns out to be so severe that I was referred to UCLH consultant. I have to stay for three nights for the operation. But the good news is I am now doing very well and felt the best for many years. So hanging in there you will be good eventually.
Well, three nights in hospital doesn't sound like fun, but hopefully it's the end of a long road and will be worth it as you recover. When is your operation?
Hello, reading through other posts as recently had a negative lap and wondering what to do next. I just wanted to ask if a gp can refer for you to a bsge centre if I’ve had a negative lap but all areas weren’t checked and all symptoms point to endo? Thank you!
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