So disheartened ๐Ÿ˜ž i don't know what to d... - Endometriosis UK

Endometriosis UK

61,213 members โ€ข 47,892 posts

So disheartened ๐Ÿ˜ž i don't know what to do anymore. . Adenomyosis is evil !

Heartof3 profile image
Heartof3
โ€ข33 Replies

Hi ladies,

I wrote a post last week after my laparoscopy to say they had diagnosed me with Adenomyosis & basically told me to forget the diagnosis.

I have just rang up my specialists secretary to see when my follow up will be as I'm in so much pain in my womb. She told me that there will be no follow up as i have been discharged ๐Ÿ˜ข Surely this is not right?

My womb pressure is awful& my back kills, what sort of life is this. every. Bloody. Day. Is. Pain ๐Ÿคข I'm sick of it!

I don't want my womb, i wish they would of took it away but no, just get on with it! After years of battling this crap with pills, coils , antimflamortary diets, physio etc. i counted down the day's for my laparoscopy. It just feels like they opened me up, disturbed it all & basically told me to ignore my symptoms ๐Ÿ˜ข

33 Replies
โ€ข

I feel your pain, I also live with adenomyosis and itโ€™s so evil what it does to our bodies and how it makes us feel. Itโ€™s changed my life so much ๐Ÿฅฒcan you ask your doctor to refer you back to gynaecology? Why did they discharge you without even telling you! ๐Ÿคฌ

What medication do you take?

Iโ€™m on naproxen for when the pain starts and when that doesnโ€™t help itโ€™s tramadol which makes me feel very ๐Ÿคฎ, itchy and itโ€™s just yucky.

X

Oh bless u ๐Ÿ˜ž awful isn't it.

So my specialist ( who was amazing) has left & i met my new specialist (who is arrogant) the day op my op, she told me she would take photos to show me after when I'm out of recovery.

Well she did pop her head around, no photos. Just told me i have adenomyosis & to forget the diagnosis & get on with it. Now I've found out I've been discharged. Absolutely gutted! It would be nice to talk it through & tell them I'd like a hysterectomy.

Like we can just ignore & forget out symptoms... We wish!

Ah do u! I take naproxen too & dyhdracodine when it's a bad flare. Last resort is tsking dyhdracodine tho as it gives me bad constipation ๐Ÿ™ˆ

I wish we could forget about a diagnosis of adenomyosis, itโ€™s hell. Clearly the person saying this doesnโ€™t have this horrid disease!! X

Exactly. Bloody insult isn't it ๐Ÿ˜ž xx

AllthatGlitters also Thank you so much for your quick reply ๐Ÿ’œ

Hey, you should put in a complaint to PALS, they shouldn't just discharge you like that. The same sort of thing happened to me, I was discharged without follow up after my first lap, as they said they didn't find anything, I complained to PALS as I had lots of unanswered questions and the surgeon basically told me I was imagining it. PALS set up a meeting with the head of gynaecology, we discussed so much in a hour, she showed me the photos which do indeed show small areas of endo, and now I'm waiting for a second lap with her. Don't give up, you have a right to treatment!

Heartof3 profile image
Heartof3 in reply to bertie1606

Hi bertie1606 Thank u for your reply ๐Ÿ’œOh wow I'm sorry this happened to u too. But I'm glad you're finally getting the right help. Not fair is it ๐Ÿ˜ž

I have left 2 voice mails with PALS now. They're so hard to get hold of, I'm hoping they contact me soon. I'm not leaving this, i can't just get in with this pain.

Did your process with Pals take long? Xx

bertie1606 profile image
bertie1606 in reply to Heartof3

Actually they were brilliant, I emailed them and they got back to me the same day to say they would talk the head of gynaecology, and then I heard back 2 or 3 days later with a date for a meeting with her. I have emailed PALS since then regarding a different issue, and again they were really quick. It sounds like I'm extremely lucky PALS at my hospital are so good! If you look on your hospital website there should be an email address for them x

Heartof3 profile image
Heartof3 in reply to bertie1606

Ahh that's good.Good idea! I will email them now.

Thanku so much for your advice ๐Ÿ’œ

bertie1606 profile image
bertie1606 in reply to Heartof3

You are very welcome, I hope you get somewhere with PALS. Just remember you are entitled to have treatment! X

Try emailing PALS if you are struggling to get a response. Itโ€™s then also in writing .

Hi dear, sorry to hear about your experience. As someone has rightly said you have a right of treatment, depending on your location, you may be able to call and request a follow up appointment. If nothing happens after that you may need to escalate the matter. Look up hospital regulator bodies where you live and forward your complaint to them. Sometimes you could request to be assigned a different consultant or specialist. If none of these works, you could also have the option of changing your clinic, the new data sharing policies now allows a new clinicians have access to your medical record if you decide to change your health service provider. I do hope any of these help.

Heartof3 profile image
Heartof3 in reply to Dpurplelady

Thank u Dpurplelady.

I have rang Pals & left messages, so hopfully they get back to me soon.

Xx

Avourneen profile image
Avourneen in reply to Heartof3

I have really bad stage four endo and adeno and I had excision for the endo and then my gynae prescribed me thr progesterone only pill for the adeno. At first it was terribel I bled loads more and it was awful but he suggested increasing the dose to two pills per day as soon as I did that my period stoppped and I have been in so much less pain since I'n older than you 49 and I think my periods have stopped by themselves now (I hope).So you could try that ? I think I might be able to cope without a hysterectomy now. A private consultation is about 200 pounds it doesn't mean you have to get the op done priavtely (which is really expensive). Most gynaecologists do priavte and NHS and if you see one for a private consulatation it usually speeds up the whole waiting process on the NHS. I can't get why your doctor won't consider this. It is really bad the way women are treated by doctors but you mustn't give up. Imagine how much better your life would be if you can get treatment, 200 pounds is not that much to save up. I think it would be worth it.Maybe your family or friends could help you. Keep trying don't give up.XX

Heartof3 profile image
Heartof3 in reply to Avourneen

That's some really good info, i will look into that. Pain free is priceless aye ๐Ÿ’œ

The proper treatment and the only treatment for adenomysiosis is to have a coil fitted and see if that helps (by stopping periods) if that doesn't work you should get a hysterectomy. So I don't understand why they discharged you without making any attempt to offer you treatment. Maybe it depends on your age ? Are you very young for having a hysterectomy? A hysterectomy does carry it's own risks of bringing on a sudden menopause and some people have some problems with other prolapses etc after a hysterectomy. But I think you should get the option to discuss what would help. I suggest go private and get a second opinion.

Heartof3 profile image
Heartof3 in reply to Avourneen

Hi Avournneen ๐Ÿ’œ

I tried the coil years ago, it was agony. I ended up having it out.

I've tried all sorts of contraceptive pills too, they just made me so hormoanal & sick.

I'm 38 & don't want any more children.

I also had a prolapse & surgery for this last year, so maybe I'd be at risk of another?

Eitherway, like u say, it would be nice to talk this all through with them ๐Ÿ˜

I wish i had the money to go private.

It's all so physically and mentally draining isn't it xx

Iโ€™ve got it too and was looking up other forms of treatment. Have any of you heard of the use of ultrasound to help break down scar tissue? Iโ€™ve seen it in research online but I donโ€™t know anywhere that does it.

Heartof3 profile image
Heartof3 in reply to Ecorc

It's awful isn't it Ecorc ๐Ÿ˜ž No? I've never heard of this ๐Ÿค” x

**CAN I ASK U LADIES A PERSONAL QUESTION, PLEASE....

Does anyone else have pain when opening bowels?

Sorry if tmi but before each expelling of a stool, i get intense contractions over & over untill I've finished.. It's awful.

Does anyone else experience this? Xx

Yes ๐Ÿ˜ž sometimes bad enough to make me sweat, feel sick and/or feel faint. Much worse during and for few days after period. Usually confined to mornings, Iโ€™m guessing because thatโ€™s the natural time of day when my poor old bowel is trying to do its jobโ€ฆI have deep infiltrating endo in the bowel, some of which was removed in an emergency operation, still waiting for an appointment to discuss further operations/treatment.

Yes! Oh it's awful isn't it. Bless u x

Feel for you utterly. I have adenomyosis that was left post lap and removal of endometriosis and adhesions. Massive amounts of pain and pain killers for months. Couldnโ€™t get the treatment I needed with the bleeding and pain and back on the NHS waiting list. Which is long. The pain killers werenโ€™t doing much bar causing so much trouble and playing with hormones did very little to manage the situation. Outcome? Got to find a way until surgery. Put myself on a bunch of nutriceicals and specialist physio as I was ready to put my head in the oven. So I understand totally. 9 weeks in and am off all pain killers, stopped bleeding, and have more energy than have done in years. Was stuck to the sofa and could barely walk to the loo . Iโ€™ll keep myself on the waiting list and decide when I get there. I know that each of us have the way that works for us, but when youโ€™ve tried all the medics options , are being shabbily treated and left with recurrent infections, inflammation, drug side effects and extreme pain there has to be another way to cope.

Aww that's so good that u have found relief ๐Ÿ˜Š so happy for u ๐Ÿ’œ Yh good idea, definitely stay in that list.

Oh i nooo ๐Ÿ˜ vicious circle isn't it. X

Have courage to explore Heartof3. You may find your answers is a combo of therapies including surgery.

Hi all ๐Ÿ‘‹๐Ÿป After my diagnosis of endo and adenomyosis in February and trying to cope with Zoladex treatment(3 implants so far), I am reaching out for support. I have arranged an appointment with a consultant who seems to be the expert in endo in my area ( week after next). Really hoping he suggests hysterectomy as I canโ€™t deal with the pain and side effects of this treatment for much longer.

Been off work since 10th January and tried a morning on Wednesday; have felt like I have run a marathon ever since. Strange that I am sore all over and exhausted when I was just at a desk-though commute was quite long.

Can I ask if consultants basically donโ€™t argue when you have adenomyosis diagnosed? I think the red mist will well and truly fall if surgery is denied for any reason.

Thank you and sending love.

VicSponge x

I'm the same as you... just want a hysterectomy now, I'm physically & mentally drained with the everyday pain.It's not fair ๐Ÿ˜ž

I hope u get the help & answers u are looking for real soon x

Hi again -hope you are well. I saw endo gynae on Monday and he agrees that I have a severe case. I am going to have a total hysterectomy. Had been given the option of leaving my left ovary but, to be honest, anything that has been near the damage or is likely to produce estrogen can GO!

I can and will deal with the hormonal fallout but and just so relieved to have had a professional agree with what I had known all along.

Waiting for a date-hopefully soon, as going through Benenden.

Vic-Sponge x

Aww so glad u have peace of mind in having a plan in place. Sou ds like u have a good suportive gynea, that definitely helps! Hopfully u don't have long to wait ๐Ÿคž๐Ÿ’–

As others have said, push for better treatment. It seems the only cure for adenomyosis pain is hysterectomy, though my consultant said that it may not be the cure-all. In any case, I believe that cutting out all the damage has to make a difference.

I really hope you can get some help soon. Hang in there x

Thank you โ˜บ๏ธ. I was in such pain past two days that I was convinced my right ovary had twisted on itself! Also realised I was constipated, so have taken a laxative to see if that helps.

Will let you know how things go with consultant. Just trying to keep distracted with small household tasks and good music for now. Something seriously needs to be done with Womenโ€™s Health. Itโ€™s like The Handsmaid

โ€˜s Tale!x

Oh i hear u, it's unreal isn't it. Litrally abuse how we litrally are left to suffer.I get the same with my right ovary, it's awful. X

๐Ÿ’— Letโ€™s hope we can get some solutions soon xxx

You may also like...