Kissing ovaries, obliterated pouch of Douglas, various cysts and adhesions... The list seemed to go on and on.
Despite years of pain and failed attempts to be taken seriously, I'm still shocked.
I guess I'd almost stopped believing my own pain because I genuinely went into my appointment confident that they'd found nothing. I was gearing myself up for a, "No more need for investigation."
I was woefully unprepared for the exact opposite and burst into tears right there and then in the doctor's office.
Now my head is spinning. I feel relieved, vindicated, sad, scared, mournful, even. I'm terrified for my fertility since I'm 31 with no kids. My partner is doing his best to comfort me but I just don't know what to say.
I guess I'm writing this as a bit of an outlet and to feel a little less alone. Sending love to everyone else going through the motions of this crazy journey.
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Think we’re in a similar boat albeit slightly different (still shocking) MRI findings. I also had the same burst into tears, relief you’re not crazy, gutted you’ve got a chronic illness.
I’m 33 have never been pregnant, have been unable to even try for the last two years due to severity of pain.
It’s an incredibly isolating place to be, waiting for a diagnosis/fighting for investigation for so long when you suspect the very thing that can seriously impact your fertility. The horrendous extended wait lists whilst people keep reminding you the clock is ticking and asking when you’re having kids.
Hopefully now you have concrete proof something is going on, they’ll be able to go in and treat/check fertility. I have my very first lap next week (terrified/relived because it’s taken eight years to get here) have been told they’ll be checking tubes whilst there.
Here’s to having answers and getting the treatment we deserve!
Thanks so much for your response 🤍. I'm so sorry you're in a similar position too! There are definitely a lot of mental gymnastics involved in this. It's like the illness and the gaslighting that comes with it both require their own treatments and healing.
Good luck with your lap, I hope you get the answers you need. Do you mind me asking how long you've had to wait for it? x
Thank you! Are you at a BSGE specialist centre or having investigations been solely at your local hospital?
I was referred from my local hospital to the BSGE in Feb, after MRI results, their multi-disciplinary team reviewed my case in May and I had first app, beginning of June. I asked to be added to their cancellation list (would advise anyone to do this if you can) but due to severity of my symptoms they have expedited surgery mostly due to daily bleeding and cervix problems which can’t be addressed without the anaesthetic. I do know that their waiting list at the moment is 62 weeks, but people are scheduled based on severity/urgency so not everyone will wait that time x
In the same boat too early 30s with stage 4 endo, andeno, large endometriomas, kissing ovaries in the PoD, random other cysts, bowel involvement etc.. and waiting first lap next month. Incase it helps, my plan is lap, zolodex to buy me time to recover, straight from that into ovary stimulation for private IVF. I presume hysterectomy after and if all goes well will IVF.
I understand completely how you feel, I’m 25 and I have a cyst on my ovary, I only have 1 ovary left as a cyst killed the other one. I’ve been advised to freeze my eggs privately but the consultant recommended for me to have an MRI but the NHS won’t do it. So now I’m stuck really as I don’t think it’s fair that I should have to pay for the MRI. I’m on the waiting list for surgery to remove the cyst but that won’t be until next year, I partly think should I just do surgery to get rid of the cyst but what if it’s worse then they think and what if my ovary doesn’t survive but then why should I have to pay thousands to freeze my eggs when it’s not my fault that I get these cysts, it’s all a nightmare… sending you so much love. I’ve had loads of cysts constantly so if u ever wanna message me I’m always here xx
I am so sorry you're going through this. I don't understand why on earth you're not able to access an MRI scan! That's scandalous. I've gotta say it does feel like a bit of a postcode lottery. Though it's exhausting, please persist as much as you can. You shouldn't have to fork out for a scan yourself.It's all quite overwhelming, isn't it? Especially when you're having to think about the future in ways you might not have been ready to.
Thanks so much, I think once I've had time to digest, I'll probably have a lot of questions, so I might just take you up on that! x
Hey I have gone through similar recently. I was diagnosed with stage 4 last June. It is so so stressful thinking and worrying about your fertility. I found I got a lot of conflicting information from different people making it even more confusing and stressful!
We are currently due to start our NHS IVF journey next week (although may need surgery again before). I have just turned 30.
Although we have been unable to get pregnant naturally due to my endometriosis having your diagnosis definitely helps speeds things up fertility wise.
A few things I found has sped up things are asking them to flush your tubes when you have your surgery and if you plan to TTC after surgery ask your consultant to request your partner to have semen analysis in case there is any issues his end too.
Thank you so much for the advice 🤍. I wouldn't have a clue about asking for my tubes to be flushed, so really appreciate that.Best of luck with your IVF journey xx
Hey there, I had a similar experience, I found out I had Stage 4 endometriosis at aged 32 when I was trying to get pregnant. I had no idea, and was dismissed by several doctors about my symptoms. I'm now 5 weeks pregnant after a laparoscopy and several rounds of IVF so if you want to ask any questions please do! I still need surgery on my bowel and appendix so I'm not out of the woods yet but don't think you can't have a family, it might take longer but it can still happen, and IVF was really life changing for me. ❤️
Congratulations! Goodness, I needed to read something like this. I've almost written myself off but it's reassuring to hear that there's hope. Wishing you a safe and happy pregnancy x
Thank you! I'm glad it gives you hope. Hope you get a good Endo consultant on board to support you and help you decide next steps. It can be so overwhelming at times and having a supportive consultant really helped me see the way forward. Best of luck x
I am so sorry to hear that so many of you are going through this. It's horrible to know how common it is yet still takes years for the diagnosis and to be listened to.I don't really have any advice other than, it is ok to feel all of the emotions and just try to ride the waves. Don't try and hold it in or feel that you're wrong for feeling what you're feeling.
I am going through the same. I have two endometriomas, kissing ovaries, sticking.. bla bla bla the list goes on! I feel so fobbed off by gps for not referring me for a pelvic scan earlier! I’m waiting for my surgery. Originally it was 6 weeks urgent and now it’s still urgent but they are telling me it’s 18 weeks from my first scan. All I can do is wait.. and at the same time I’m in pain all the time everyday. I tried to contact my gp and they gave me something which made the pain worse!! Ahh I think gps just have no understanding of endo; it saddens me.
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Feeling lost 
Feeling low and alone.
Recently diagnosed!!
Feeling completely lost.
Feeling lost and confused 
