Adenomyosis

[rachcopey]

Has anybody been diagnosed with adenomyosis alongside endometriosis??

[Summer143]

Yes, I had both as well as multiple fibroids and a blocked left fallopisn tube. Just had a hysterectomy (leaving ovaries) as well as excision of endo.

[rachcopey in reply to Summer143]

I'd never heard of it. I'm on prostap injections now in preparation for hysterectomy. Can I ask how old you are?xx

[Adhamilton in reply to rachcopey]

I'm waiting to have my hysterectomy 😩

[Kerriemc in reply to Adhamilton]

Don't be nervous it was the best thing I ever did keep your ovaries tho makes for an easier menopause.

[Adhamilton in reply to Summer143]

Hi I'm having a hysterectomy within the next month and they are leaving ovaries how are you feeling I'm so so nervous 😩

[Kerriemc in reply to Adhamilton]

Don't be nervous it was the best thing I ever did keep your ovaries tho makes for an easier menopause.

[Adhamilton in reply to Kerriemc]

Thank u! Can you describe your pain before hysterectomy? And how it made you feel! 😀

[Hidden]

I did, I had my hysterectomy 3 months ago. I had quite extensive disease including a large RV nodule and bladder involvement. I also had my ovaries and tubes removed to reduce the chance of the disease returning because my consultant said that I needed to avoid further bowel surgeries if at all possible. I'm 39.

[RLJarman in reply to Hidden]

I have just been told I would be best to have my ovaries removed hysterectomy and bowel shave with excision of any other endo found. Can you please tell me about your recovery? Thanks

[Hidden in reply to RLJarman]

Sure. The first month was difficult. I had some issues in the first couple of weeks - first of all it took my bowel forever to get going post op and when it did (6 days after surgery) the pain was so bad I had to go to A&E for morphine. I then got an infection in the vaginal cuff. Went to the GP for antibiotics but unfortunately these didn't work quickly enough and I had a massive bleed from the vaginal wound 14 days after surgery which meant another rush to A&E. I was readmitted to hospital for 2 nights for IV antibiotics. After that things got a lot better and I haven't had any other issues. I was absolutely exhausted for the first month and had to sleep in the day every day, but once that passed things got better on an almost daily basis. My husband went back to work when I was 8 weeks post op and by that point I was able to manage everything - driving, school runs etc. I'm self employed so I didn't have a return to work date but was working full time again by around 6 weeks. I have been on HRT now for 10 days and wish it would hurry up and stop the flushes, but I do feel a lot better after the surgery and have no regrets. That said, surgical menopause is really tough. But it's manageable and better than then endo.

[RLJarman in reply to Hidden]

sorry to hear about all the complications post op. I hope you have a much better quality of life going forward. Thank you for your reply. What HRT did they start you on?

[Hidden in reply to RLJarman]

They've started me on tibolone - the consultant said it was worth trying for around 3 months (though he only gave me a month's worth of tablets, don't know if that was a hint!) but that i would probably find oestrogen patches better.

[RLJarman in reply to Hidden]

I was told about the oestrogen patch yet the consultant prefers to stick with what he knows. I have had bad headaches /migraine from hormone's before and it does worry me. I suppose it's early days for you. How is your mood affected? Is it mainly just the flushes that bother you?

[Hidden in reply to RLJarman]

The main problem I have is the flushes/sweats - the past week has been an absolute nightmare with the hot weather. I have been really fortunate in that I am not finding mood swings to be too much of a problem. I'd had decapeptyl + prostap prior to surgery both with and without HRT addback so I had some idea what it would be like and that helped a lot.

[RLJarman in reply to Hidden]

Why did they wait a while before starting the hrt?

[Hidden in reply to RLJarman]

The consultant asked me to wait 3 months as he said that having that time with a v low level of oestrogen helps to reduce the likelihood of the disease coming back. I had the surgery at the big bsge centre in London.

[RLJarman in reply to Hidden]

I see, I hope that it helps you. Thanks again for sharing.

[Patricia2015]

I have both. First extensive adenomyosis was discovered few years ago. Recently deep infiltrating endometriosis by MRI.

[gwen80]

After my previous laparoscopy I was told as well as endometriosis I likely have adenomyosis (based on the appearance of the uterus). I'm having a further laparoscopy in August due to worsening symptoms - it'll be interesting to see how much endo I have because if I don't have much then I guess a lot of my symptoms are adenomyosis.

[Summer143]

I am 48, was not showing any sign of menopause. I feel fine considering the op was 7.5 hours, due to endo removal. I was back home within 24 hours. Had bowel issues for first 3 week, which consultant confirmed as normal due to endo being removed off of everything including bowel, bladder and rectum. My interstitial cystitis has flared up this week, thought it was UTI but urine sample came back negative. Did not think it was a UTI due to the sheer amount of antibiotics I had both at hospital and 7 days worth 4 days after surgery. Mine was done by a very good consultant which I am grateful for.

[Hidden]

H,

I've just been diagnosed by MRI with adenomyosis on top of my existing endo the adenomyosis pain is bad worse that the endo am waiting for surgery got pre op next week I think they are just going to look and treat endometrioma and put in a coil. My gynaecologist said adenomyosis is quite common in ladies who have had endo for a while. They wouldn't have known if I had not had the scan for my endo to check the endometrioma x

[DaisyThoughts]

Hi. Yes, severe endometriosis and more recently a diagnosis of adenomyosis with small fibroids. I was also diagnosed with fibromyalgia last year. Difficult to know which causes me the most pain- I just know I have a lot of it!!

[Kerriemc in reply to DaisyThoughts]

Fibromyalgia seems to occur a lot in Endo sufferers and other Autoimmune issues. I was diagnosed with PVNS in addition to my endo and Adneomyosis. PVNS is a joint and tumour condition. Pain throughout all joints but a tumour growing in my elbow. Autoimmune issues at the base of it all

[DaisyThoughts in reply to Kerriemc]

Hi. I'd never heard of PVNS though just goggled it and that must be awful to live with too. Yes, I've been reading about the connection with other possible auto- immune diseases. Hope today is a reasonable one for you pain wise. x

[Roxie101]

Hi

I had a lap back in Jan and was diagnosed endo and because if other symptoms a possibility of adenomyosis. The gyne said she couldn't fully diagnose it though because to do that my womb would need to be removed. I don't know much else about it really.

X

[Kerriemc]

Yes I was. I was stage 4 endo and at age 45 was diagnosed with Adneomyosis. I was very very ill almost bled to death. My blood count was very low. I had no energy and just could not stop bleeding. Specialist diagnosed it. I was put on pills to reduce bleeding which helped temporarily but I had to have a hysterectomy. I kept my ovaries and cervix ( I prob should have had my cervix removed don't need it and still have to have Pap Smears.)

Keeping my ovaries was the best thing as it took 8 years for my ovaries to die off, so I didn't go into menopause until 8 years had passed.

Surgery for me was the best option plus my endo is no longer troublesome except for adhesions from scar tissue so still have pelvic pain from time to time.

[RLJarman]

I was told by the consultant (second opinion)this week that he saw features of Adenomyosis from my ultrasound.I was diagnosed by lap last October with Endometriosis. Looks like a complete pelvic clearance for me. I'm 43 and have 2 children.

[rachcopey]

Thank you all for commenting on my post. Been interesting reads and very similar to my health issues. I also suffer from B12 deficiency; I have my injections for B12 and prostap tomorrow. I'm also taking tibalone. Can't say I've found any benefit from prostap injections at the moment although it's early days. Just seem to be in more pain now than before. I had prostap injections when I was 20 and didn't seem to help. My next follow up is November and I'm likely to say go ahead with hysterectomy. I'm 36 now and been suffering since I was 10 😐😐😐

[Janie32]

Yes I have x endo diagnosed 2005 then most recent op 2017 diagnosed more and added adenmyosis by MRI