Adenomyosis suffers? Please give me your honest advice/ opinions please? I Feel so alone

[Heartof3]

Hello ladies,

I am currently recovering from a laparoscopy so please bare with me...

After years of suffering with cyclical horrendous pelvic, womb &back pains that is now painful almost everyday, i finally had my laparoscopy which revealed Adenomyosis.

I don't know much about Adenomyosis so i have some self education to do.

But what has thrown me is the fact that my surgeon/specialist was so dismissive with it.. i was instantly told "yes we found you have a large bulky womb & all indications of Adenomyosis but that does not explain your pains!"

I explained how i have period pains everyday that get worse with the more active i am. I was then told " you need to get the diagnosis of Adenomyosis out of your head because Adenomyosis only affects periods & not everyday! You need to change your diet & go to physio for your bladder!"

I was litrally left in tears feeling like i am going crazy!

I am a healthy weight & eat healthy. My bladder is fine exept i do get a feeling of a UTI before my period.

I feel alone & dismissed. Recovery is awful my period has come really heavy & i have severe sharp pain around my right ovary. i haven't been given no after care advice, just feel shut out like it's all in my head?

Please if anyone else has been through similar or has experience with Adenomyosis please reply.

Really appreciate anything 💖 thank you x

[Avourneen]

I think you need to see a different doctor and get a second opinion. Adenomysiosis can only be treated by a hysterectomy. I don't know why the doctor would have done a lap found adeno and not offered you this option.

Your symptoms sound like you could have endo along your uretha or something with the uTI feeling. Perhaps your surgeon has missed some of the endo. I had a lap and after still having lots of pain had a scan where the sonographer said I still had loads of endo and the surgeon had missed it.

You could try pelvic floor physio, I haven't but lots of ladies say it has really helped them but if I were in your position I would get a second opinion even if it means going privately and I would get an MRI to see if endo was missed in the op.

I'm sorry you are being treated like this it's so unfair that your concerns are not being taken seriously. I find it mysifying that what pateinets experince is just ignored. You know your body best. Go back, find a different doctor and get a scan. Keep fighting don't give up. You will get there. xxx

[Heartof3 in reply to Avourneen]

Thank you so much for reply.I honestly think that my surgeon was adamant & prepared to treat endo plus i was cancelled & then rescheduled for the same day again. Day ward was was so busy, i waited 9+ hours for my operation to which i overheard a nurse saying my surgeon is flying through patients to fit me & another case in.

I think she was too busy to perform a hysterectomy & resorses are too tight to admit me on a ward after.

Basically i was under the care of a previous specialist who was amazing, now all his patients have been shared out between other specialists they're run down, sad truth!

Before my op i was told she would take photos & show me after.. i didn't see one photo, just a quick visit of making me feel like Adenomyosis is present but nit effecting me because they basically don't have time 😏

I have fought this for for years & counted down the day's for this operation. I feel so disheartened.

It's so shit what us woman gave to go through aye 😞

Thank you so much for your advice.

I hope you're doing well, or as well as csn be 💖

[Gwills]

I was only diagnosed with Adenomyosis more recently but have known about my endometriosis for a long time. I also have bladder issues that I have been assured are nothing to do with either of the two and am seeing a urology consultant instead. I would definitely say you need to go get a second opinion. You’ve been treated terribly and it’s a horrible enough thing to go through without being dismissed too. Unfortunately you will have to keep on at them and keep fighting to be heard BUT you will get there and you will get some answers. In the meantime read up as much as you can on Adenomyosis (have you looked at the nhs website about it?). Also I watched a tv programme on BBC2 that was interesting called “Your Body Uncovered”, think it was episode 5. Have a watch on catch up as the lady on there has both too and they explain a bit about it. Hope you get some answers soon, just know you’re not alone xx

[Heartof3 in reply to Gwills]

Thank you for your reply 💖 Do you go to physio too? If so, is it given you any relief?

I can hold my urine but i get a burning feeling before my periods.

Ahh yh i see that programme, amazing isn't it!

Xx

[Gwills in reply to Heartof3]

I do go to physio but for back pain which I think is all related. It definitely has helped! xx

[Heartof3 in reply to Gwills]

Vicious circle isn't it 😖 X

[BloomingMarvellous]

So feel for you. First of all stick with what you know and experience. That is your truth.

[Heartof3 in reply to BloomingMarvellous]

Thanks Hun. It's just so disheartening, like i was given an explanation then basically told it's in my head!? It's unreal how a Specialist can make us feel so crap, especially after seeing & diagnosing the problem 😞

Xx

[BloomingMarvellous in reply to Heartof3]

Yup. No one has the right to make you feel so unheard or crap. Move on they ain’t worth the light you are.

[BloomingMarvellous]

Secondly ! ( ooops pressed reply too early) Physio can help but it has to be the right sort. That isn’t generally what’s available ( ie the kegel route which can either do nothing or worsen the situation). Listening to this might help you get your head round why there’s the pain etc . I found it really helpful for my adenomyosis pain and the rest, as have been working with the therapist involved. Since working with her both pain, gut function and the unending UTI’s and burning has gone, I’ve stopped the bladder leaking for the most part and the endo belly is reducing down. ( Plus I’ve more energy in the few weeks that have had in years) I do it at home and it’s a few minutes a day. It’s worth an explore anyway.

open.spotify.com/episode/4P...

Diet wise I’ve worked at finding my route with the basics of Omega 3 and antioxidants. I found the following resources useful (having zero luck with fodmops and eliminating apart from sensible things like too much convienance, high sugar stuff and keeping off eggs which are an allergen for me. Others swear it’s milk or gluten .Finding your bag is key here ) @leah-brueg and also @heal-endo. It’s not an all or nothing - I’ve needed surgery for adhesions etc but that’s off the back of a lifetime of being told normal, in your head, not a thing. It’s defo a thing and you need proper, expert care. Have courage your not alone.

[Heartof3 in reply to BloomingMarvellous]

Aww thank you so much BloomingMarvellous 💖 i really appreciate all this.This is great to hear that you are finding positive thingsto help you, i am definitely going ti try them too 😊 xx

[BloomingMarvellous]

You can always DM me on the messaging to let me know how you are . Don’t be alone.

[Heartof3 in reply to BloomingMarvellous]

Thank you so much lovely lady.Right back at you 💖

[KylieP]

Have you had a pelvic MRI? I have adenomyosis, endometriosis and fibroids. The endometriosis was confirmed on mri. I've never had a lap. I would request a 2nd opinion. Are you under an accredited endo centre? I was referred in based on my symptoms, before i even had a confirmed diagnosis.

[Heartof3 in reply to KylieP]

Hiya KylieP

No, I've never hada MRI?

I have an internal scan 2 months ago that revealed pelvic congestion.. although my specialist says she don't believe in peovic congestion either 😏

I had my laparoscopy last week which revealed Adenomyosis, all I've been told is to forgetthe diagnosis & go back to physio for my bladder pain.. but bladder pain/ pressure is caused by the swelling bulky uterus pressing on the bladder 🤔

I'm hust under my nhs gynea.. i belive she's only been there about 5 years & but the info I've gathered she's not a Specialist in that department. So frustrating! I'm thinking of contacting PALS? maybe they can assist me? Xx

[Kimple123]

hi. I had pain and pressure for 3 years that was misdiagnosed as coccyx damage! They injected area with steroids!!!! In 2020 the pain came back and I took matters in to own hands. I asked doc to write referral to Gynae consultant. I then sped up process by going private as I could t stand it any longer! The gynaecology consultant diagnosed me in 10 mins of hearing my symptoms! I could t believe it! After all those years of not being listened to! I have adenomyosis. My womb is much larger than should be. They think caused by evacuation of womb after childbirth! Anyway….so he put me on the mini pill (progesterone only). It changed my life! The pain was gone within 3-6 weeks. No periods either. However, I have had body aches and horrendous hormonal symptoms on and off and recently it’s more ‘on’! I go to loo in middle of night and my womb just feels constantly tender. I think the pill has its own set of symptoms and my mood is dire! I feel like I’m pregnant all the time. My tummy is extended too and Iv put on weight: so I’m on list again to see consultant and I think the only option may now be to remove the womb! Which at 42 was too upsetting but I’m 45 now and don’t see my getting for another! I think my biggest symptom now is body aches and stiffness! Iv has lots of tests but do think it’s related again to the womb as it coincides with hormones and some womb nipping pains I get.

Let me know if anyone experienced same issues. Esp on trying the mini pill. But for most - the pill is a free way to get some relief from the symptoms for a while and allows you to ‘think straight’ …which you can’t do when you have constant pain.

[Kimple123 in reply to Kimple123]

I mean to say that the reason they may advise hysterectomy now is that without progesterone (mini menopause affect) or taking daily neproxen (anti inflammatory pills) then it’s the only option. Adenomyosis is otherwise tricky to treat. I think they can operate and keep the womb but it’s not straight forward.

I do hope you have had some decent advice in last six months. As my gynae guy was honestly amazing to talk to.