Adenomyosis diagnosis journey

[HolsBamboozledwomb]

Hi Everyone,

This is a long one but I hope it helps someone out there who may be on the same journey!

From my first period when I was 11 I had long heavy painful periods, It would wipe me out, I was told that it was normal and that periods were painful and that as a young lady I needed to get on with my day, go to school do PE and not complain. Take some paracetamol for the cramps and pain.

My periods weren't regular, I could have periods that last days, weeks, months and I could have a week, day or months off from having a period too; as I got older and the more periods I had they became more intense with pain. My mom eventually took me to see my GP, a registrar who I saw when I was 16 told me It would be a miracle if I had children with no real explanation as to why, and being 16 I didn't ask questions. He was a doctor in my eyes and he knew best. At this point I had an ultrasound and as I was 16 didn't have my mom with me. I was devastated but became accustomed to the fact I would never be a mother of my own biological children.

Between the ages of 14 and now, I have tried contraceptive pills, injection, implantation, coils and nothing stopped my periods and they seemed to make me feel worse.

Through my late teens and early 20's I started getting recurrent Pelvic Infections after having a period and I was left in absolute agony. I had miscarriage after miscarriage and it became so hard on my body and heart I honestly considered never having sex again. It was just all too painful the physical side of it and the emotional side of it.

When I was 24 I got pregnant with my son, he's 10 today and I thank whatever god or universe allowed my body to carry him to a healthy term! When my periods returned they were even worse than before, so I tried the copper coil, this made my periods heavier. I then got an infection from the coil and I was hospitalised with the coil needing to be cut out as there was so much swelling it couldn't just be pulled.

After not having any contraception for a while and letting my body just get on with what it was doing, I was blessed with a second son. Again it was another miracle. I shouldn't of been able to have one let alone 2 children!

After 10 months, the pain from periods again and infections got so intense my pelvis was broken, it was swollen constantly, it was painful to move, I spent days in bed crying from pain, I couldn't enjoy my family or anything else, I became severely depressed and anxious, I wouldn't go for meals for the embarrassment of not being able to sit on a chair because of the pain, I was taking months at a time off work. I was put on the pill, started co-codamol and naproxen, this then moved onto tramadol, morphine, naproxen, Gabapentin, amitriptyline all at the same time just to be able to get out of bed and take the kids to school and try and work. I had to drop my hours at work too because I couldn't sit for long periods of time.

My periods were now ailing my pelvis, going to the toilet for either number 1 or 2 would make me scream in pain, I had pain in my stomach, my back, the pain would send shooting pains up my back and down my legs, I had recurrent falls, falling down the stairs, while I was shopping because I had just been in so much pain for so long my body just stopped fighting. I even asked my GP to put me into a medically induced coma until it was solved and sorted. (They didn't 😂)

I had a lap on mother's day 2 years ago, I was told that they couldn't find endo, there was nothing wrong with me. A woman surgeon stood there shrugged her shoulders and said there is nothing wrong with you, there is no reason for you to be under our service. Maybe you need help from the mental health trust! 4 weeks later I was sent to the emergency Gynae clinic, where a Dr there referred me back to the consultant to have prostrap injections to induce menopause, low and behold the pain started to subside after about 4 months of having no periods, I had the nerves burned in my coccyx around the 4 month period and the pain just started to vanish.

After waiting a year to be seen by the consultant, a month ago, I was told from the consultant that I have Adenomyosis, and enlarged 'angry' vessels that sit around my uterus. The appointment was 5 minutes long. She took one look at my lap results and said that it was Adeno and that I had options. I took the hysterectomy. After 21 years of pain and agony and being told to see mental health professionals, I was told that I wasn't insane. That there was a reason for it all.

Now I go to the gym, I've lost 2 stone, I can enjoy time with my kids, I have a job that I can work full time in and love, go for meals and dancing with friends. I have my life back.

Please keep fighting for your body. Don't give up. You know yourself better than any doctor. If something isn't right fight for what you need and deserve.

Sending Love to all those still fighting.

Xxx

[Endo_warrior01]

My heart goes out to you reading this. I’m so sorry you had such a rough ride for so long. But I’m so glad things are now better and you feel you finally have your life back.

I have my first laparoscopy next Wednesday and I’m so worried they won’t find anything and I will still be left without answers. I tell myself not to panic and whether they find anything or not it will be a step forward in diagnosis / ruling things out.

Reading this does bring some hope to me, particularly around having children when you were told it wouldn’t be possible. This is my biggest concern.

Thank you for sharing your story. 💛

[HolsBamboozledwomb in reply to Endo_warrior01]

I'm so happy that it has given you some hope, I hope that you get the answers you need from the lap and if you don't get chance to speak to the consultant my only advise is that you ask for a follow up with him/her so they can look over the images as a second pair of eyes if they didn't find anything. Keep going hon you're doing great! Xxx

[Endo_warrior01 in reply to HolsBamboozledwomb]

Thank you. I will definitely make sure I get to speak to them somehow!

Do you have any other tips / advice regarding the lap? I’m a staff nurse so I have basic knowledge of anaesthesia and surgery but I’m still so nervous!!

Sending love 💛

[HolsBamboozledwomb in reply to Endo_warrior01]

You probably are more knowledgeable than me about the whole thing. I took things to keep me busy, word search, earphones ect. I took a colouring book too so that I was doing something to calm my nerves. I took in snacks for when I woke up too. Make sure you have your comfort clothes with you and you can bleed after the lap too so maybe sanitary towels if there are brands you prefer. They gave me morphine for when I woke up to help with the pain and I did feel very dry, so if you aren't a fan of water may s take some cordial with you? Try not to overthink about the outcome, which is way easier said than done, but just try to stay calm. The staff are always amazing, which I'm sure you know being one of them! The nurses are just another level of human so talk to them if you need to ask any questions. Sending love xx

[Endo_warrior01 in reply to HolsBamboozledwomb]

That’s really kind of you and very reassuring. Thanks for sharing your tips! 💛

[1Poppy1234]

I've been told that if I have a hysterectomy then pain could come back within a few months and if it does could be worse but I have endometriosis too. I thought if you had Adenomyosis then you had endometriosis too?? I watched the seminar on Adenomyosis and they said gold standard a hysterectomy then end of but that's not what I've been told. Thank you for sharing your story. I'm really struggling with pain aches even my eyes ache. I'm on the desogesterol tablet doubled dose now but still having continuous periods I also have the mirena in.

[HolsBamboozledwomb in reply to 1Poppy1234]

I have been told, because they have to that I could still get some pain after the hysterectomy but most women are pain free. I think it's something they have to say to cover themselves. I think that you're more likely to have endometriosis too. I think I may be a lucky one to not have both but to be honest because of the surgeons missing Adenomyosis it doesn't give me much confidence they missed that too. I had the double dose aswell and I still had periods. You could ask for the injections to induce menopause and see how you get on? Keep going and keep fighting for yourself. It's so hard when your in pain and keep hitting brick walls but it's so important to keep going xxx

[1Poppy1234 in reply to HolsBamboozledwomb]

Thank you for replying, I have already has the decapeptyl jabs for six months it didn't stop it all but did help quite a lot. The consultant didn't want me to have another round as they are so bad for you.

[HolsBamboozledwomb in reply to 1Poppy1234]

I have been having the Prostap injections monthly, after 6 months, they give you HRT after 6 months and monitor you as regularly as they do women in natural menopause. Bone density scans and mammograms and stuff. At my appointment this month for my injection they're going to start me on half a HRT patch as I am so worried about having periods return, so they're starting slowly. I wonder is that something they could consider if it's available? X

[1Poppy1234 in reply to HolsBamboozledwomb]

I can't have oestrogen, Adenomyosis is oestrogen fed and I get awful hormonal migraines with my periods . This desogesterol hasn't worked for me by the looks of things. When I was on the decapeptyl jab I had it for six months no monitoring no scans etc. NHS so neglectful now they are so stretched that people are getting pushed to the bottom. I've been on the list for a hysterectomy since last June and it's Nov time but will be later now due to strikes again I'm sure. 😕