I still feel quite new to understanding endo and been fortunate to have had a short journey so far although I don’t know what to expect for the future. I started having really painful periods around the start of 2023 (was previously on the pill since my teens) and had already been suffering with fatigue and frequent bugs, infections etc for years before.
I went to my GP in summer 2023 and was sent for an ultrasound which found a chocolate cyst - endometriosis was being mentioned but I didnt understand it much at the time and the GP didn’t explain much either. In Oct I was referred to an NHS gynaecologist for which I have the appointment for in April 2024. Since the referral I saw a specialist via BUPA and have had a laparoscopy with endometriosis excision and removal of cyst. They found I also have adenomyosis and some small fibroids. I had my surgery in Dec and had a follow up with my consultant 6 weeks later and am planning to have another follow up after 3 months.
However, I’m not sure what’s next. I don’t know if my insurance will cover more follow ups and I’ve kept my NHS appointment but I’m not sure if I should? My private consultant has spoken to me about fertility challenges but my insurance doesn’t cover anything fertility or pregnancy related and we can’t really afford IVF. I’m on dionegest at the moment but once I’m done we will start ttc. I feel really lost with what to do/expect next and I don’t want to give up my NHS appointment as it’s been a 6 month wait but I’m not sure what I’ll be asking for in the appointment and therefore whether I should cancel?
Sorry for the long post, I’ve just found this group and it’s great to have a forum with people who understand.
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KirbyStar
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Hi Kirby, sorry you’re going through this. I would start ttc straight away and also get referred by your GP for ivf on the NHS - I’m not sure how long you have to be ttc for, but it’s definitely worth getting the ball rolling. From my understanding the advice is to start ttc after excision surgery as that’s when you’re most likely to have success.
Thank you, we haven’t really started ttc yet as I’m on medication post surgery so my cycle isn’t back to normal yet, but I’ll be done with the dionegest in a couple of months so will start then. As we haven’t already been trying I think it’s too soon for me to go to my gp about fertility, but I’m hoping we’ll conceive by the end of the year and its good to hear the time after surgery is your best bet. I’ll definitely bring up fertility at my April gynae appointment anyway, even though it’ll be too early to know if we’ll need help or not. The timing of everything feels like a minefield! I’m 34 so feeling the pressure to not lose any time 😵💫
I would keep your NHS appointment as you want it recorded on your NHS record that you have endometriosis. Ensure you have a copy of your surgical report and laparoscopy images so you can take them to the appointment. You may need the fibroids removed in the future while TTC. I’d also second the below comment about being referred for fertility investigations and assistance ASAP. The waits can be long on NHS. They usually require you to try to conceive for 12/24 months before they refer but endometriosis can impact fertility (not everyone has issues). So if need be I’d say you had been TtC for a while. Look up the guidelines and assisted conception pathways for your NHS area so you go to your GP appointment fully informed. The NHS endometriosis/gynaecology team may also be able to support an IVF referral. As said below the best time to conceive naturally is in the first 3-6 months post endometriosis excision surgery as I would start trying ASAP. Best of luck.
Also, many women have recurrence of disease so it helps to already have contact with a good gynaecologist in the NHS, especially if your insurance won’t cover a repeat excision surgery. Depending on your stage of disease you can be referred to a tertiary NHS endometriosis centre but that can take time so also consider this.
Thank you for your reply, I’ve been second guessing myself about the appointment but glad to hear I do have reason to go and I’ll get all my reports ready beforehand. I’m currently still on Dionegest post surgery which I was told would be very unlikely to conceive whilst taking (I think it’s like the pill) but I’ll be done with that at the end of April and we’ll start TTC straight away. I’m going to ask about fertility support at my NHS appointment but I expect they’ll tell me to wait as I won’t have had any time trying at that point although I’m hoping I’ll get some useful info if needed. To be honest I’m scared to try and get fertility support as my BMI is too high (about 33). I’m trying to be more active this year and be better with sleep but I don’t eat badly or loads and I don’t feel hugely overweight either, but I’m short (5’1) and I think BMI kinda screws me over because of it. Even at my slimmest as a very active teen I wasn’t anywhere near the lowest end of the “healthy” weight according to what’s acceptable for my BMI 🙄. I guess I’ll just have to hope we don’t need it and see what response I get when I ask the gynae
It might be worth asking your GP to do some basic fertility checks like thyroid function, iron, B12, folate, vitamin D etc. you could also start taking a prenatal and folic acid as it’s recommended to start taking these a few months before TTC. Thyroid may be worth checking because if you are struggling with weight (ignoring BMI), you could be hypothyroid and this can impact TTC. Also, best for your partner to have basic fertility checks because infertility is 50/50 so always ensuring you are both clear.
That’s a good idea, I’ve been checked for most of those things a few years ago related to fatigue and I was folate and iron deficient and my thyroid was slightly low but not enough to be classed as under active. I started pre natals in Jan so I’ll have had 3 months by the time I’m done with the dionegest. I hadn’t considered getting my levels checked at the Dr but now you’ve mentioned it I think it would be a good idea due to low levels of folate in the past. I potentially had my thyroid checked recently as part of investigations that lead to endo but will get it checked if not. I haven’t felt the best lately but I’m not sure if it’s because I’m still recovering or partly due to time of year (SAD) so will be good to know if there’s other things going on.
Hi did same with my work Bupa. I had quite a few follow up appointments as they class it as a continuation of treatment. Even though they don't cover chronic conditions they cover flare ups. My consultant who also works for NHS wrote everything to my GP all my diagnosis and treatment and tests are on my NHS profile. So you may find when you Go again and mention fertility his recommendation will be there ready for your NHS app.
That’s good to know about BUPA, I had a post surgery follow up 6 weeks later which I’ve already had and that was included in the claim for the surgery, but I’ve yet to put a new claim in for a second follow up so I’m not sure if it’ll get accepted but hopefully so. I don’t know if my notes have been sent to my GP so I need to check, the consultant puts everything on a portal so I should be able to just download it all but I haven’t gone through it since the surgery.
Defo what everyone else has said. You deserve the appointment and they will be able to support you long term with planning.
You are entitled to the care and you need the support.
Fertility treatment is a postcode lottery so definitely worth having an investigate for your locality first so you have realistic expectations. I’d also agree about being flexible with the truth about how long you’ve been ttc.
'the GP didn’t explain much either' is something I have encountered too unfortunately. Keep your appointment with the specialist, update them maybe they should monitor you as you are now. Bring with you your discharge surgery letter etc for thier attention.
You should cancel the NHS appointment as that was for follow up after the scan found endo. You have since had private intervention instead so the reason for the referral no longer applies. You are now in the private system with a follow up planned. You can’t mix private and NHS for the same treatment. Someone else should now have the opportunity of that appointment.
Endometriomas are usually associated with rectovaginal disease which is classed as severe and should only be treated by a multidisciplinary team in a centre. So I assume the private surgeon didn’t find any?
Didn’t find any what? I’ve essentially finished treatment with my private consultant now and I don’t know if I can go back in the future. I did ask someone in the NHS a while ago about the appointment and they said keep it for now. For a different condition, but someone I know recently switched between private and NHS for specialist treatment and he said it worked out well so I’m confused about what’s best. Everything is so confusing and as I’m learning more I’m becoming aware that it’s unlikely I'm just done with it but I also don’t know what I’m supposed to do now. Am I really just supposed to wait until it disrupts my life again and then sit on a waiting list for god knows how long?! Even though I’m post surgery now I still feel so down and distressed about the diagnosis and frustrated because I don’t know what to expect next.
I might have misread your post. Your surgery was in December and you had a follow up after 6 weeks so have presumably had that and are planning another at 3 months so sometime in March? That being the case you are still considering yourself under private care.
Private and NHS care can be mixed for different aspects of treatment as long as they can be seen to be separate (there is a comprehensive NHS guide on it), so for example someone waiting for NHS surgery can arrange a private scan as long as it is on separate premises and can be seen to be a separate procedure. But since your NHS referral was for endo found on a scan, which should have resulted in a more advanced scan to look for severe disease with a decision made as to where you needed treating depending on results, that referral is now redundant. But obviously it is for you to decide if you go and what you are going for as they are likely to ask why since you’ve since had treatment.
When I said I assume the private surgeon didn’t find any I mean any rectovaginal/severe disease .
Any ongoing treatment is based on pain and/or infertility so yes you unfortunately do have to wait and see if pain returns or if you have trouble conceiving. Endo isn’t routinely followed up as the progression of the disease can’t be predicted for any person. As a consequence it can’t be predicted if anyone will need further surgery or not.
My private consultant wants me to come back after 3 months to assess if the pain has returned because it was a bit soon to say only 6 weeks after surgery, but I’m yet to submit the insurance claim so I don’t know if I can go back. I do already know that my insurance doesn’t cover anything fertility related. My private consultant had suggested some things related to fertility but I know I can’t see him for that.
To be honest I don’t really understand how severe mine was/is. My surgeon said it was bad which is why he did my surgery last in the day so he had more time. He removed the endometrioma, found my ovaries were stuck to the pelvic wall so unstuck them, and also removed a butterfly shaped patch of endometriosis I think on the wall of the pelvic cavity, although he also said they found endo on my ureta and I think some on my bowel. He did go through the pictures and explain it to me but I don’t think I have a plain English summary of it so I think I'm getting that right but I might be misremembering. He also found small fibroids that don’t protrude into the uterus, I can’t remember the exact term for them but he said they were the least worrying type. And he found adenomyosis. He didn’t give it a stage so I don’t know what it would have been classed as in stages.
I’ve just looked at my NHS referral letter and it says appointment with gynaecology. When my GP referred me it was after the ultrasound and he just said there’s nothing more GPs can do except prescribe painkillers and the pill as they’re not specialists so they can only offer pain management. Given the new information would my GP not still refer me to a specialist?
You would only be referred if there is a reason for it.
Endo on the bowel and ureter is rectovaginal endo and it was likely severe involving other organs. On the NHS you would have had detailed imaging (MRI) to map your pelvis to see how deep the endo was as it goes deep and can’t all be visible at a lap. A multidisciplinary team would have then discussed your case including a bowel surgeon if thought appropriate and a complex excision would have been planned. When you are referred to a centre on the NHS it is a complete package including follow up. This is called tertiary care and is for highly specialised conditions which severe endo is. The surgeons have to have very advanced surgical skills.
I have just seen that your surgeon was just a general gynaecologist apparently with no endo expertise so he shouldn’t have touched you if that’s the case. But now you’ve chosen the private path you can’t move into the NHS system as they will consider you’ve been treated. The centres are for surgery which you’ve had elsewhere. If you get ongoing pain after say 6 months you can then get referred to a NHS centre from scratch with the usual waiting time.
In the meantime I suggest you get a copy of the surgical report to see exactly what was found and done. Feel free to message if you need info on how to do that or need any more help.
I would say like the others it’s helpful to stay on the NHs even if the waits are long as then on your nhs record file it will have it on your notes which is helpful if you need further treatment down the line. Do you know if your gynecologist through the nhs is specialised specifically in endometriosis or by I say this is because they know more about the disease than most other s general gynecologist on the multi disciplinary team they have really helpful endometriosis specialist nurses who help if you need someone to talk to about changing diet or having specific medications that help pain management. The nhs list is extremely lengthy but it does depend where you are located. Even my second op this year I would have been waiting a year or so and that’s to have a coletractol surgeon in with my endo specialist I find though if you go out of you county waiting times can differ. But as I like my consultant and the time and because of family requirement s it’s easy for my family to take me to these appointments treatment s and it’s not out of there way. Also once you have a diagonosis gps some
Of them have been a lot more helpful towards me and definitely don’t think I’m crazy. 🤪 xx
I’ve just looked up the consultant I’ve been referred to an unfortunately he is not an endo specialist. He’s an obstetrician and gynaecologist and says he sees a broad range of gynae disorders including fibroids, pelvic pain and polycystic ovaries but doesn’t specifically say endo on there. I didn’t know you could be specifically referred to an endo specialist. I’m in London (zone 6) so I’ve just been sent to my local hospital’s gynae team.
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