Adenomyosis Advice Association

New member

Hi everyone

My name is Lauren and I am a new member for the Adenomyosis Advice Association.

I have had Endometriosis for years and have undergone 2 laparoscopic surgeries in the last 2 years where they removed significant amounts.

However, I underwent my 3rd laparoscopic surgery very recently and they didn’t find any “new Endometriosis growths” which to me was quite shocking due to the amount of pain I had been in. Prior to this 3rd lap, I had been out of the medical menopause for 4 months and it was during these 4 months my symptoms rocketed (whereas whilst i was in the medical menopause I was pretty much symptom free). These included:

- severe pelvic pain that prevented me from going to work (first time in a long time that’s happened!)

-agony after intercourse

-heavy and very long periods

- intense bladder symptoms

- feeling like my insides were going to fall out

Now the surgeons have suggested that they think I have adenomyosis and that this is the cause of all my pain. They also said I have nerve damage from previous deep Endometriosis growths.

I just wanted to know if anyone else has had a similar experience with their diagnosis? I’ve been told unless I want a hysterectomy right now, they can’t “officially” diagnose it (as they’ll send it off to the lab) but are happy to give me the diagnosis, especially as the medical menopause worked so well.

I also want to know what I do now? I know there is no cure but I feel at a loose end.

Thank you

Lauren

4 Replies
oldestnewest

Hi Lauren,

Lauren I read all 3 of your posts and replied to your marriage one and don't know where it disappeared to, it didn't post up!

Firstly, I wanted to say that you can take anti inflamatories and possibly 2 days before your big day some natural diuretics to stop that swell in the belly, no white bread white carbs and sugar should help a few days prior to your big day.

I married in EXACTLY the same health position as you and I had a dress that corsetted up the back with straps and it pulled me in. These can be added to dresses that do not have that kind of structure or a good comfortable corset under. I also suggest you give yourself a break and drink alcohol on painkillers its not medically advisable but 3 doctors in my practice did not leap across the table to help me when I made this confession in the last 3 years that I had to self medicate with wine ontop of painkillers to get through important functions and family occassions, like Christmas day. A kidney and liver work up last year showed I'm in great condition that way. I'm married since 2012 and have not worked since 2013 due to the pain of periods.

My periods had me bedridden for 3 days due to pain and flow with clots. I had our beautiful child in 2014 and by the sounds of it he was a bit of a miracle. I had a Hysterectomy in March this year after becoming bedridden in January with pain lasting almost 3 weeks per month plus I was increasingly more urinary incontinent. We paid for my surgery as I literally couldn't look After my child.

After the pregnancy everything worsened, the pmt got longer and stronger the bleeding was heavier every month, I actually had perimenopausal symptoms too and would be nauseaous with migraines too. The Adenomyosis was saw in an ultrasound in 2015 and on MRI scan in 2017. June 2017 was the proper diagnosis of it.

When I had my total hysterectomy in March the surgeon confirmed my state on me asking after waking up from the anaesthetic was horrendous and that they were glad to get the womb out of me given its state, it was at least 2 times the length and width of the typical uterus but must have looked spent. Endometriosis had engulfed and pinned 1 ovary to my pelvic wall and my bowel was the same. Prior to this I only had mild endometriosis in 2012 which was saw during a laparoscopy to remove a chocolate cyst off ovary. It had not been spoken of since. It wasn't saw to be present on my MRI in 2017 so it shows you how it can be hiding amongst our organs.....

My decision to have the total hysterectomy with bso and cervix taken was to get rid of ever thing I potentially blamed for all my past ills and cancer of the cervix was on my mind and in hind sight to minimise the organs left for endometriosis to grow back on. I believe that women who have our diagnosis need to remember that first and for most you are human life, you deserve to be pain free. Often we find it terribly difficult to conceive and with Adenomyosis comes the increased miscarriage rate. I was a 50% success rate.

I couldn't go through that again trying for a second child. The pregnancy came with painful conditions like pubic symphisis disorder, at 16 weeks my pelvice was EXTREMELY sore carrying a 16 week old small baby, an unstable prlvice was very painful even doing light chores plus I had stabbing shooting pain in the heavier months that stopped me dead in my tracks needing helped back into a chair. No one could tell me what it was at my maternity appointments. It was probably the Adenomyosis?

I think you need to think hard and discuss it with your partner, your quality of life is very important.

- Firstly you should enjoy every last second of the wedding preparations, put these decisions to the back of your mind until your celebrations are over. Take painkillers up until your big day. If it's that bad seek from your GP stronger painkiller you should have a high dose anti inflammatory at the least or combine co codemol with Ibufrofenor naproxen to see you through your wedding, I think a Drs meeting is a must for you. I was on an anti spasmodic which I believed was a help in the run up and during my periods.

This isn't easy now you have found out you have Adenomyosis with the Endometriosis.

Best wishes, you will feel beautiful on your big day, hey I did it with my leg in a cast and was on crutches so we can all do what we set out to do!

Lots of luck and well wishes for your wedding .

Helly.

X

Reply

Hi HellyLlewelly

Thank you for your reply and advice!

I am pleased to say that my wedding went super well, and my endometriosis/adenomyosis pain kept itself at bay! Before my wedding, I was taking my pain relief regularly and, as you already suggested, I gave up alcohol and any other trigger foods - this was a big help! Glad we had the same mind on that :)

I'm sorry that your pregnancy came with pain and other conditions. I have been advised that it is likely a pregnancy for myself will be painful too - my consultants and GPs have said this can be the adenomyosis or the endometriosis adhesions.

My husband (still feels weird saying that!) is amazingly supportive, and we have had a few conversations regarding children and hysterectomies, but I feel I am too young at the moment.

Lauren x

1 like
Reply

Congratulations Mrs! So glad to hear you had a great wedding day!

You have persevered through this. Hard job to stop eating the things we like. I could never really nail my own trigger foods down I was just sore all the time lol.

I started taking a spoonful of pure organic coconut oil per day it's a multi functional suoerfood and a natural inti-inflamatory.

It made my skin super soft and better nails too. Nourishing from the inside out.

I'm so glad you updated me!

Enjoy yourself and like me, if you are not bombarded with natural maternal instincts, take your time and go with the flow.

One thibg I will say is that you will undoubtedly feel overcome with proudness the minute you become pregnant and get the hit of lovely calming progesterone wellness. I had pain but it was one of the happiest times of my life so it counteracted the pain. I enjoyed being pregnant immensely.

Well wishes and the best start to a happy life for you Mr & Mrs x

Helly. X

Reply

Aw HellyLlewelly that is so lovely, thank you! x

Reply