Recently diagnosed Endo

[Booty42]

Hi I'm new and looking for some insight away from the walls of medics.My story starts 3 years ago, I was bleeding more than I wasn't. I had always had heavy periods since they started and a lot of pain and anaemia more often than not, but thought it was normal (I'm 46 now). After having 2 children I opted for Mirena Coil which worked well for 10 years, still had 7 day periods but lighter and no pain. Anyway 3 years ago Mirena due to be changed again, I had one inserted no problem, a few weeks later lots of cramps, flooding and coil came out, another inserted same happened again so GP offered pill instead as my anaemia was bad at this point. Had pill but bled for 6 weeks everyday, GP took me off pill back on another mirena, few days later bleeding heavily and flooding along. NHS offered a scan but it was 6 weeks wait, I paid for private scan to find that coil was stuck in lining of cervix and starting to perforate, GP after a lot of tugging and pain managed to remove.

Husband had snip at this point so I went contraceptive free, 4 months later bleeding intermittently, I thought possibly start of menopause but GP said sounds more like a gynae prob and referred for bloods, scan and swabs. Bloods normal apart from low iron, swab I don't know as had scan day after referral which showed thickened endometrium. Referral to hysteroscopy, polyp growth found, removed, biopsies and benign results. Few weeks later an endometrial ablation to control the thickened endometrium. No mention at all in all I've had about endometriosis.

Fast track 2 years, forgot to mention still had periods every month after endo ablation and still 7 days long but lighter and bizarrely the start of cyclical migraines which I have prescribed meds for. Around January this year started bleeding intermittently again, I had a lot going on, daughter just given birth, husband had ear op and we were in process of moving, so I thought it wasn't much to worry about prob another polyp, so I put to back of mind till end of Feb after we moved, but the bleeding was more frequent. I booked into GP but no app for 4 weeks as reception did not deem as urgent even after I told her my history, new area new surgery I didn't want to be the annoying new patient.

After 4 weeks saw GP end of March, he ordered lots of bloods, swabs and done 2ww for scan, same process as before so not that worried. Had bloods done a week later, the day after the GP had a call from the path lab with abnormal results and I had a text message from Gp stating 'all of your results are satisfactory apart from one which is raised, I have referred you for a 2ww scan' I was shocked the Dr had not rubg me to explain, I had no clue what result was raised and confused as a previous referral had already been done. I phoned the surgery and they said the GP had no availability to talk to them but they think the referral was doubled up as GP prob didn't check my notes and they had no idea what result was raised as not yes visible on the system.

I phoned Gp surgery every day for a week to get result, finally, to be told by reception that it was my CA125 that was raised at 124. I understand this could be several other things that raise it not just cancer, but with something so serious surely the Gp should have spoken to me. Anyway I waited 9 days to hear about an app for scan and nothing so I phoned the USS dept, they had put me on the routine pile by mistake not the 2ww so all they had was another 17days away, which I took.

The waiting got too much knowing the CA125 was raised, so I paid for a private well woman pelvic scan, couldn't locate left ovary. Right ovary 6cm endometrioma with 2 solid components within and some calcification. The sonographer was suprised i had never been diagnosed with endometriosis. I wasn't expecting that. I took the report to my gp and they phoned 2 days later offering an app for 3 weeks time but I had one booked sooner as a follow up from NHS scan still to take place.

Had NHS scan yesterday and as I confirmed I had a private scan and I knew the findings they were able to be a bit more informative (usually they are not allowed to discuss findings) the NHS sonographer did find left ovary but didn't comment on that, she did confirm the findings

Of a large endometrioma and also said I had an infiltrated uterus, which would be in line with stage3/4 endometriosis and she was shocked I'd never been diagnosed.

I now have 2 weeks till I see my GP to discuss what happens next, very frustrated and anxious. I cannot get app sooner, I have tried but I'm terrified of what will happen with the findings and what surgery I will undergo.

Sorry its a huge story but I have been on a rollercoaster and wanted to give the full picture. Any views on what happens next will be greatly accepted, thanks

[Jem33]

it’s horrible having to wait so long and the fact that your endo has probably been growing when you should have been diagnosed and getting treatment sooner is such a common and frustrating occurrence.

My advice would be to use the 2 weeks before your appointment to do as much research about endo and adeno as possible. Write down all your symptoms including how frequent they are or have been over the years and give a copy to your GP it will help them have a clearer picture of your journey and allow you not to forget anything when you go in. Also write down any questions you have and just go through them like an interview writing down their answers or take someone with you who will be able to digest some of the information for you as it can be quite overwhelming.

Take a copy of the NICE guidelines so you know the treatment pathway for someone with your diagnosis. If you have confirmed severe endo then your treatment should be in a BSGE centre and there is no point wasting time going through a general gynaecologist to then have to be referred on.

Additionally request copies of your GP notes and any scans you have had at hospitals so you have the results yourself going forward. This all takes time that could be valuable to your treatment.

My CA125 was raised (no one told me this I had to find this info myself) and a trainee sonographer found one cyst on an ovary. whilst I was awaiting my gynae (general) appt I got called in for an MRI and the report took a month to go back to the gynae when I was eventually diagnosed with advanced stage endometriosis with bilateral cysts, ovaries stuck to uterus and all this stuck to rectum which indicates a frozen pelvis. I have now had a further MRI to map my pelvis and awaiting referral to specialist centre for my surgery options but even now I’m still not clear whether it will be a lap to excise and unstick everything or a full hysterectomy with or without ovary removal.

Good luck and sending you a hug as we all need one sometimes 🤗

[Booty42 in reply to Jem33]

Thanks for your reply, I feel very lonely with it all and I'm not the sort that shouts to be heard, I also don't complain about pain so everyone thinks I'm OK but I'm really not.I have a tilted womb and have suffered with bowel probs for last few years, I'm really worried this has affected my bowel and will need surgery on that.

Apart from gynae probs and linked probs to that I'm a healthy person, I don't smoke, don't drink, I'm not overweight and lucky to only need to see the Dr only once or twice a year. The last time I had surgery was for a dog bite and I needed surgery on thigh under GA, the GA made me feel so poorly I'm terrified more of that than what they actually will be doing to me when they decide what to do.

I will definitely take your advice and write down everything and print the guidelines etc, I keep trying to keep busy but it's on my mind all the time.

Hope things move forward positively for you soon, thanks again really appreciate the time you took to reply.

[Jem33 in reply to Booty42]

It can be a lonely time but try lean on the people close to you for support even if they don’t fully understand just talking about how you’re feeling can help you process it a little. And take plenty care of yourself mentally asking for professional support if you need it. Make sure and tell your GP and any future consultant all your worries however insignificant you think they are because in the bigger picture they are not as they are important to you.

Yeh my uterus is anteverted as well with bowel problems for years it’s just such a nasty cruel condition.

It will be on your mind a lot until you know what is going on inside and what the plan is for your care. The not knowing is always worse but once you know you can process it all.

Best of luck at your appointment and feel free to message anytime 😊