Unsure what to do any advice

[mbal123]

Hi I am going back to see consultant at end of week, I have mild endometriosis and adenomyosis ( thickening of the womb lining ) also have painful bladder syndrome , can't decide weather to have mirena , endometrial ablation, or historectomy had symtoms for past 20 years but getting worse I'm 45 and feel like I need to get sorted.

Loads of scary stories about all options , any advice would be most welcome 😀

[RachaelE]

I would be interested to know how your adenomyosis was diagnosed. They suspected I had it but the only way to tell for sure is to have a hysterectomy and look at it under a microscope. Turned out I didn't have it, but I did have adhesions which were causing the pain. I didn't get on at all well with the Mirena, it was very uncomfortable having it put in and then caused me more pain for six months. When I had it removed I had the heaviest bleed ever and filled the bath with blood. There were clots the size of my fist and blood tests suggested I'd lost a unit of blood. Should have called an ambulance, apparently, but what can you do when your standing in a bath in your birthday suit and the only person in the house is your 17 year old son?! Teenage boys really don't need to see that! However, many women find the Mirena a life saver so it might be worth giving it a go. If it's uncomfortable or painful it can easily be removed and other options explored. I had an ablation to stop my heavy bleeding and it worked. Recovery was quick and relatively painless. Don't just opt for a hysterectomy without trying other treatments. It's a massive operation and many people underestimate just how long and difficult the recover can be. I've had lots of complications and 15 months on I'm still having problems.

[mbal123 in reply to RachaelE]

Hi thanks for reply , consultant said after laparoscopy that my uterus was globular and adenomyosis with course fiber's !!! Have since spoke to another consultant and said it's not just endometriosis your dealing with you also have adenomyosis .

My cervix is a bit irregular and I always get infections after anything baby's , laparoscopy,tooth out etc, so thinking mirena may be a bit risky , can I ask why did you have hysterectomy if ablation worked ?

I have constant ache but not bad pain most of the time ,also pain on intercourse that can be like a knife in my stomach so wondered if hysterectomy would clear some space if you know what I mean .

[RachaelE in reply to mbal123]

I had a hysterectomy because I was in constant pain despite the ablation. It turned out I had adhesions between my left ovary, Fallopian tube and colon. Every time my bowels moved, even wind 💨, was agony and even walking caused more pain. I was also having a terrible time with the perimenopause, suicidal at times, so having my ovaries removed and going on a level dose of oestrogen made me feel normal again. I had the knife like pain as well, before and after the hysterectomy. After the op I developed more adhesions and had to have them divided because it was affecting my bowel movements. Seem to be better now, 4 months on from the adhesiolysis.

I was prone to all infections going until I started taking Vitamin D about two years ago. Apart from an infection following the hysterectomy, I've not had a cold, chest infection or flu.

[mbal123]

Thanks think I'll try ablation if consultant thinks it's suitable

[mbal123]

Saw consultant yesterday think I may try pill first not keep but think I'm right in thinking ablation won't stop endometriosis growing but hormones may , having scan next week to see if adonomiosis is putting pressure on bladder as PBS bad , hope you feel better soon would hope after historectomy things would improve , feel like it's a slow path to an inevitable op 😏

[RachaelE in reply to mbal123]

Always best to follow advice of your consultant. We're all different and what suits one won't suit another. Horses for courses, and all that. I'm not good with oral hormones and the Mirena was a nightmare. Try everything and anything before surgery. It really is the last resort. Good luck and I hope you feel well soon. X

[chloecat74]

Hi, I have had very similar problems and spent most of last year barely able to function with pain, ridiculous heavy bleeding where I worried about leaving the house (I had cycles of 20 days lasting for 10 days bleeding), and tiredness from lack of vitamin d and iron. Anyway I was on track from a full hysterectomy as I also have a cyst on my ovary (had my other ovary removed years ago with cyst). I'd refused to have mirena for most of the year as I react strongly to hormones but finally agreed in November as thought it was worth a try before resorting to surgery and it's been fantastic. I've only had one period since which was normal rather than heavy and my strength, stamina, libido etc has been growing ever since. I've been able to join the gym even. I feel a bit hormonal at times but take Agnus Castus which works brilliantly at keeping me calm. The only downside is I've had spotting everyday since it was fitted but this is bearable compared to the bleeding before and apparently will end eventually. The pain has totally stopped and my bladder issues are greatly reduced without the pressure from the uterus on it anymore. So I'd say it's definitely worth a try before resorting to surgery. I hope this helps with your decision.