Diagnosed with Adenomyosis

[wdwfan1973]

Hi all, I'm new here and in need of support. My name is Annabel and I'm 39. I'm married to a very understanding and lovely man, it will be our 10th wedding anniversary in August. In 2006 I started getting intense pain in my pelvis and ovary areas. At first it would happen in the afternoon, then a few months later I woke up to it and since then I'm in pain 24/7. After many tests and doctor visits I was told it sounded like endometriosis and I was told it goes hand in hand with polycystic ovary syndrome, which I was finally told I have in 1996 after years of heavy and abnormal periods (from the age of 10 I had a period every 6 months and it was horrid).

Since 2006 I've been referred twice and had 6 months of Zoladex, 1 year of depo injections and 2 years on norethisterone with no breaks. None of these helped one bit. The first consultant I saw in 2008 was horrible and told me it was all in my head and I had to fight for an ultrasound. Of course that showed I still had PCOS and something that could be endo so I was given the depo and told it would get rid of it. Last year I was referred to another hospital, St George's in Tooting, and the consultants are so much better. I had another ultrasound, an MRI and sigmoidoscopy as one of my complaints was a dragging feeling in my bowel whenever I went and constipation.

The MRI showed I have adenomyosis causing a blocked junction in my womb so tomorrow I'm being fitted with the Mirena coil as its apparently been known to help. I'm pretty scared about it as the consultant said because I am larger and have not had children, it will be difficult to fit. To be honest, things are very sore and painful "down there" and sex can be excruciating so its a bit worrying. My doctor tried to give me a smear a few years ago and it was so painful she couldn't get the tool in and had to stop. I'm on tramadol (8 a day), codeine 8-10 a day depending on pain levels) plus I take ibuprofen and paracetamol on and off, again depending on how bad a day it is.

I'm not too positive about it working - after other treatments failed I don't want to get excited that I may finally be pain-free and then it doesn't work. I feel like my life has ground to a halt. I'm in so much pain, sometimes my painkillers don't touch it. I barely leave the house (every 2 weeks I visit my family) as it hurts to walk. I'm following Weight Watchers as I've been overweight so long due to my PCOS and finally it feels like its working. Since last May i've lost 2 stone. Up untIl 16 I was a normal sized girl with a little puppy fat and even though my eating habits didn't change, my weight started to balloon. After a year I saw my GP and I was referred for tests. I was told nothing was wrong so I struggled on. Fast forward from 1990 to 1996 and I ended up in hospital in extreme pain with the worst bleeding I've ever had, and I was told it was on my records I had PCOS.

I'm lucky and fortunate to have my husband and he's been very understanding. He helps me as much as he can with housework and he cooks on weekends, runs me a bath when I'm very bad etc. A few weeks back he told me I'd lost my sparkle and he hated seeing me in so much pain. I felt so bad. I can't fool him for one minute - I try to smile and when he asks me if I'm ok, I say yes but he smiles and says "liar". I guess the pain shows on my face.

If the coil doesn't work then surgery is next. My consultant admitted that having a lap wouldn't necessarily help so he wanted to try this first. My fertility is shot after years of PCOS and hormone imbalance so I'm sorely tempted to ask for a hysterectomy. Years ago when we were trying for a child, I was put on Clomid and it turned me into a nightmare. By the end of the 2 months hubby begged me not to take it again and after several tests, it showed it wasn't helping anyway and I wasn't even ovulating. I know it's drastic but I've had 6 years of pain and I've had enough. I've lost 2 jobs due to this darn disease and I miss having my own money. Luckily at the moment hubby makes enough so that's one stress I don't have.

I think I've waffled enough, I feel a little better after getting this off my chest and it helps to know I'm not alone in this.

Annabel

[ladybird7]

Hi Annabel

You poor poor thing, sounds like you've been going through hell. I'm not sure how much support I can offer, I have had endo about a year now and I know how awful the pain is, goodness knows how people like you have had to put up with it for so long. 2 months ago I was given oramorph to take home as I was in so much pain, annoyingly I wasn't paying enough attention cos I was so drowsy and fell down stairs and badly broke my leg needing surgery! Then in the hospital they took my oramorph off me and weren't giving me enough each dose, my tummy was agony compared to my leg! Luckily, (well I hope), I saw my gynae consultant again last week and he's started me on prostar injections (I was using nose spray but it was obviously not working) - so I've had 3 days of no pain - amazing! Really hope that's it gone, he said it would be immediate, no telling whether it'll come back though because I can only have this for 6 months.

Good luck to you, I really hope something works for you soon. I totally want to get back to work as well, thank god my parents are helping me.

xxx

[ladybird7]

Are they fitting the mirena under general anaesthetic? if not make sure you take pain killers beforehand - it's supposed to help you relax so it's easier to fit. xxx

[wdwfan1973]

Thanks for the comments. Ladybird you poor thing breaking your leg I've never taken oramorph, I had to beg my GP for tramadol as the codeine didn't always work. I didn't know they could fit the coil under general, I was going to ask my consultant about it tomorrow. I was going to take some tramadol anyway, as I was told to take it before having the smear a few years back. I've not gone under general before. Fingers crossed all will go well, at least I'll have my hubby with me xx

[worth71]

everyone is different and will respond differently to various treatments - i have had a mirena in for almost a year now, and it still never fails to surprise me.

for the fitting, it did not hurt aprt from a little cramping in my womb, however i have had 2 children (a long time ago 21 & 14 they are) so i imagine that is why i felt no cervical pain, as they say it is more suited for women who have had babies, as the cervix is slightly open compared to that of a woman who has not, saying that though the pain is quick and compared to what you have been going through it will probably be a breeze.

so far the mirena has not been good for me, yes my periods are somewhat lighter but when you think sometimes i could not leave the house, or even the toilet as i would be changing tampons, the most absorbant, every 20 mins, whereas now it is still heavy but manageable most of the time - what i don't like is that i am still on my period at least 50% of the time, there is no pattern its all very erattic, and when i'm not on my period i'm usually still spotting or red mucous stuff so life without a sanitary towel hmmm what is that. it has not helped with the pain in any way at all, so i'm still laid up quite a bit with my old faithful friend.....my hot water bottle - at least 3-4 times per week i am laid up for several hours in labour like pain, but more sharper. i am also in constant pain as i have a large cyst on my ovary which they think is a chocolate cyst, have another scan on thursday to check it.

so all in all, i was told that 'most probably' i would not have hardly any more periods and therefore no more pain once the coil settled down......give it 3 months, no give it 6.......no give it 9 months - having said that it does work for some women, but from what i've generally found is not very often for women with our types of problems but like i said give it a go, i think we all will try anything to try to relieve some pain from ourselves - good luck, i hope it helps you xxxx

[Aquitaine]

Hi Annabel -

Sounds like you've had a really hard time. I have two gynacologists who said slightly different things about adenmyosis. One said I should go straight for a hysterectomy. The other said I should try Mirena first.

As I didn't want anything too dramatic, I had Mirena put in. It was done during a hysteroscopy (we were doing a bunch of other things at the time - removing fibroids and so on), so I was anaesthetised and can't tell you much about how this happened, but I understand it's pretty quick. Given what you've been going through it's probably worth it.

So far my experience has been pretty good. It takes a little while for periods to settle down, but I've had almost no pain at all, which is absolutely amazing. Like you, I don't have children so I wasn't sure whether it was going to be OK, but I haven't had any problems with it.

Given your situation, I think it's worth trying mirena before going for the hysterectomy, as if it works it could be really helpful. But if it doesn't work for you, be persistent with your doctor, as you've clearly been suffering and this shouldn't go on for so long.

Good luck, and I hope things improve for you soon.

[ladybird7]

Hope it goes ok for you? I was on tramadol before but my body got used to it! Now I take dihydrocodeine with paracetamol if I need and if it really gets bad I take oxycodone. They wouldn't let me take the oramorph having broken my leg!! But I think the oxycodone makes me just as drowsy! Take care xxx

[wdwfan1973]

Thanks ladies. The coil is in and I have to be honest, it was not pleasant. The doc gave me a local anaesthetic and I never want one in my cervix again, it was ghastly. They had to tip my head back and once it was over, I felt awful. I went clammy and cold and thought I was going to vomit. I had to lie down for awhile. The nurse was lovely and wouldn't let me go until my blood pressure went down and the feeling sick had gone. I had a horrid tummy ache all the way, went to change and I'm bleeding heavily. I wasn't told that fitting it could make me bleed.

I have an ultrasound booked for 6 August so they can make sure it's in the right place, then a follow-up appointment with my consultant on 13 August. I have to continue with the norethisterone with no breaks until he's seen me. I'm not expecting miracles but felt I should give it a go. Thanks for the comments all xx

[ladybird7]

Good luck with it, I hope it works for you. I bled for about 3 months constantly and was still in just as much pain as before so they took it out. Sorry, you don't need horror stories! I was told it was really good so I think I was just an exception.

[wdwfan1973]

No worries, I've read plenty of horror stories but I'm glad I didn't go hunting for stories until after I'd had it fitted or I'd have been put off lol. I was hunting because I've been on norethisterone for over 2 years and I didn't expect to bleed as soon as it was put in, I was a bit worried. I'm not expecting it to help but who knows, it might. I don't want to get my hopes up. My consultant said I won't notice a difference for at least 3 months but I've read it can take longer. I guess we'll see. I hope the prostap keeps working for you Ladybrd xx

[daniellewright]

Hello, if you would like more support please feel free to like the Adenomyosis Advice Association on Facebook or find the website via all usual search engines. We are based in the UK but are available worldwide - free of charge to help and support - anytime. Kind regards, Danielle x

[wdwfan1973]

Thank you Danielle, I have signed the petition and am looking around the website. I'm sure the info will be of use to explain things to my husband and mother. My mum in particular has had a hard time understanding what I've been going through the last 6 years. Thanks for the info, it is much appreciated.

Annabel x