Help Needed Before Appointment! (adenomyosis)

[London98]

Hi everyone, after reading posts here for months I thought I'd finally end my silence and post for the first time. I'm 23 and was diagnosed with adenomyosis around 2 years ago. After a long diagnosis journey, being fobbed off and trying what felt like every pill/ injection under the sun, I agreed to have the mirena coil in october 2020. Like so many others on this site I have had a horrendous time pushing to be taken seriously. This has been strangely difficult as I am a med student and often find it really hard pushing for attention in what I know is already an overwhelmed service (NHS). I also often feel like medical professionals treat me as a colleague (even though I am still a student) and often forget themselves that I am the patient in that situation and may need some support/ explanations.

This past month has been particularly difficult as I have been having symptoms that line up very closely with ovarian cancer. Although I realise these symptoms can often overlap with adenomyosis I frightened myself so much that I asked for a CA125 test from my GP who agreed without any further comment. The result came back raised (I can't remember the exact result as I was sort of in shock at the time). The GP originally wanted me to have an urgent US but also told me to 'not lose sleep over it' as she would contact my gynaecologist. Since then I haven't heard anything further, no scans etc. I have come to the point of thinking that if there was a chance of having ovarian cancer surely somebody would have taken action by now, so I am trying to find some comfort in this thought.

I finally managed to get an appointment (in person!) with my gynaecologist on Friday. Due to the fact that I have to go to the hospital alone, and being quite traumatised by recent appointments (painful pelvic exams, uncomfortable internal US and the worst experience having the mirena) I would love some advice about how to stay confident, describe clearly how much I am being affected and not back down quickly just to 'be nice'.

I would also be so interested to learn if anyone else has experience with ca125 tests and whether they are useful at all for us with adenomyosis?

[Gardenist]

Hi sorry to hear about your journey so far and I hope you get some clarity at your appointment. I had adenomyosis and had a hysterectomy....after a long journey to preserve my fertility and have 2 children. I had the mirena coil and it was a horrible experience. It didn't suit me at all. My advice to you is to go into your appointment with everything written down. Then don't leave until all of your points have been heard and your questions have been answered. About 15 years ago I sat in an a GP appointment and refused to leave until I was taken seriously. It was hard not to cry but to calmly list the impact on my life and how it was not good enough to be told to go away and live with it. I find at each of these appointments you get a new snapshot of information, never to whole picture. It is difficult to know what to do for the best and their is a lot of trial and error involved but the important thing I think is to feel heard and to feel like you are progressing forward. If you don't feel like that then don't leave until you do.

I have found that sadly seeing the same doctor in a private setting led to much more direct action than the NHS....because I was paying or the resources were not stretched? I've also accepted over 25+ years that I have a lifelong condition. I've managed it differently at different stages of my life but it is a part of me that isn't going anywhere. Good luck with your appointment.

[Signer43 in reply to Gardenist]

Hi I hope you don’t mind me jumping in here to ask a question but when you had your hysterectomy did you have your ovaries removed? I am on the priority list for a hysterectomy and my consultant wants me to consider having ovaries removed at the same time but I don’t know if this is the right thing to do. I’m 40 so feel there are risks entering early menopause but if I don’t have ovaries removed will the adenomyosis pain remain afterwards? Any advice would be amazing thank you

[Gardenist in reply to Signer43]

Hello I didn't have them removed but I was in my 30s and the thinking was it was too soon. Adenomyosis would no longer be a problem for you I believe as that is only located in the bit they will be taking out. However I still have endometriosis responding to hormones in my stomach cavity and so that is a problem. If you have endometriosis elsewhere that isn't cut out it will still be a problem. I believe if you take Hrt it would cause the same issues too, but I'm not an expert in that area. Im glad I have my ovaries most of the time but really hate them at other times...I think its a difficult call. Good luck with your decision.

[Signer43 in reply to Gardenist]

Thank you that’s so helpful x

[Smokey2020]

Hi. I had ca125 and came back at 412. I’ve been diagnosed with endo and adenomyosis but did go down the same route as you with first making sure it wasn’t ovarian cancer. It was the results of my MRI that confirmed diagnosis. I agree with previous confirm to go to your appointment prepared. Good luck

[Hidden]

Hi, I had a similar worry earlier. I read that the ca125 test isn't really useful for women with endometriosis (as potential marker for cancer) because the ca125 levels tend to be elevated when endo is present.

[Username12345678]

Hello there, sorry to hear that you are going through this. I can certainly echo the advice of Gardenist and recommend writing down a list of questions that you want answered. Also I find taking a pen & paper with me so that I can write down answers very helpful as the consultant will need to slow down to give you time to write things up. Explain that you need time to do this as you are not able to have someone with you to help you take things in. Try to stop at the end and read everything before you leave and also ask what the process is to follow up if you have further questions. I have found over the years that’s it’s really helpful to get the name and number of the consultants secretary. Good luck with your appointment x

[Bluesea7]

I had test CA 125 it was very high they phoned me up next day, then sent me for scans , I did not have ovarian cancer, they did a internal examination then said I had fibroids, then mri scan showed a big mass of endometriosis. I've had full hysterectomy since. This was a few years ago still remember very well.

[Lostintransit in reply to Bluesea7]

Hi Bluesea7,

I’m pretty much in that situation and though I went into menopause at 38, the pain is worse than ever. I truly believe my Nan suffered with endo and she also had fibroids so had a partial hysto but they left her ovaries in. But it solved her pain issues.

I’m having to pay private because I’ve been going through this for 20 years and can’t take it anymore. My first gynae after diagnosis that took 7 years, she thought I had adeno after going through the usual hell of zoladex, depo, mirena etc. And that was way back then. Unfortunately she left the hospital and the two gynaes I’ve had over the years since, utter pigs.

So I’m hoping for an MRI and a full hysterectomy.

I was just wondering how you are regarding pain now? Did it resolve it I guess?

[Bluesea7]

I've have no pain now I have gained weight you go into menopause my endometriosis they told me has all gone any traces will go with menopause, I did not have hormone tablets that is your choice, when in menopause, I hope you get it sorted, it took me years to get sorted. I had ovaries out as well as it was stuck and stuck to bladder and bowels .

[MamaofFurBabies]

Hi. Echoing what everyone else bas said really but also you can take someone to appointments if you feel you need them, especially if your likely to be examined. I have been recently to the hospital and have seen women with their partners there.... At least in the waiting room for support if nothing else.It's crazy to me that we can meet people outside and get our nails done next week but we feel we cant/are being told we can't have a loved one with us for appointments to calm us down and help to retain some of the information

Good luck and I hope you get all your answers xx