Help! new to all this: Hi, this is my... - Adenomyosis Advic...

Adenomyosis Advice Association

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Help! new to all this

bonker07
bonker07

Hi,

this is my 12th week of continuous bleeding and pain, had an urgent gynae appointment last week, the Dr attempted an internal which literally had me on the ceiling! Im now going for a hysteroscopy (due to endometrial thickening) & polypectomy under a GA next week.

The Dr stated that I may have some Adenomyosis due to how painful i found the internal (and I've had 3 children). My question is: did any of you find that your pain increased after the internal examination? also, is it possible to elect for a hysterectomy?

sorry for the long post!

thank you

9 Replies

Yes and yes, yes yes, pain horrendous after internal in January 2017, the more she went to the right (was feeling me internally from left to right the more it got painfull I almost lept off the couch, had period like pain and was in bed with painkillers for three days after.

My MRI showed my womb larger and boggy so to speak and gynae/endo consultant said Adenomyosis not seeing endometriosis on MRI. I put a atrong case to him for a total hystetectomy, he agreed and I went on to NHS waiting.

Same guy I paid for his private surgery after I waited on him via NHS as the list here in Northern Ireland is at 2 year wait, I couldnt go on in pain and in bed for days every month with mid month horredous cyclical pain. He is a very affible man very very genuine easy to speak with. Turns out I was riddled with Endometriosis too, ovaries and bowel in particular.

Im 7 months post op and dont get the cyclical pain nor bleeds any more.

On consultation bring in a check list and read the reasons why you need to have the hysterectomy.

Refuse to take the hormonal suggestions like Zoladex etc.

Insist you are at the end of the road with this.

I got everything taken away with a view that the more I had taken away the less places this basdard could grow back on me.

Im on combined hrt to stop the regrowth for 1 year then switch to oestrogen only.

Hysterectomy is a big deal though...Im having back pain which may be related to disc trouble I have though, Im also barely able to move without sweating though the sweating was there and combined with anxiety Ive always had. Im on a pretty high hrt level as only 39.

Ive some arm and shoulder stiffness too but I was like this pre op.

I simply couldnt go on menstruating, in pain, missing out on life occassions, planning life around bleeds...looking after my child like this...

Its not all rosey here for me ywt but I believe they say 7 months is still early doors post hysterectomy.

Good luck.

H.

Hi,

thank you so much for taking the time to reply. Sounds like you've really been going through it, no wonder you've been in so much pain.

The gynae doc I saw was actually a locum GP with an interest in women's health. She was efficient but I felt I had no choice but to agree to having the coil fitted (this'll be done during the op).

I suffer with terrible migraines and worry that the hormones from the coil will make them worse. Like you, Im missing out on life, I feel like I'm a burden on my family too which I hate.

Im relieved to know that Im not alone in experiencing pain after a PV examination, its been a week and I'm still doubled over in pain.

really hope that you continue to make a steady recovery from your surgery

x

You are very welcome! Its just my experience and I got lots of support on this site in the run up and after my surgery!

Just a couple more things you mention, I have had similar experience with anything hormonal, the pill (I tried 11, from age of 18 to 38, played havock with my migraines as well as feeling very blue about 3 days before being due on. I was always convinced to try another.

I had shooting pains in my legs and dead arms in the shower, I didnt like the effect of them on my body, plus I still bled lots on the Pill intermittently.

The coil did not sit well in me and having given it 7 months to settle, I more than bore with it. I bled lots but had shooting pains down my legs so was on ibuprofen around the clock but many times had to leave work unable to concentrate with the pain.

I wasn't migrainney though from what I remember.

I believe it didn't settle well due to me having adenomyosis of the womb. It seems logical. Nothing seemed to like being in there. I also suffered certain painful positions during intercourse for all my years, there were ways that I felt I was being poked and I would literally jump a foot high in pain.

Now my cervix/ womb/ovaries are gone Im having a great, pain free sex life at 39 for the first time in my life.

There are all of these options and yes, most professionals will follow a list of protocol options. You know your body and the logic I settled with was no more hormonal interventions as they did not seem to agree with me personally.

I had finished my family so went straight for the elected hysterectomy.

Trust your body and your own instincts, remember they are health professionals but cannot make you do something you are uncomfortable with.

Its a big step, Im certainly not out of the woods completely though have at least 65% - 70% of my ailments gone post hysterectomy. I sleep great and just have to keep positive that the pain from endometriosis is at bay and that the bugger isnt returning for quite some time.

We have alot ro deal with having these issues.

Good luck and keep us posted on your progress!

H.

X

Yes yes yes! Last time I had an internal I felt like my organs were tearing apart. I have also elected to have a hysterectomy (I am currently on the waiting list). I would say though that although the pain and bleeding are horrible, it’s worth trying everything you can prior to electing to have a hysterectomy. I’m currenly on zoladex (not sure why HellyLlewelly recommends saying no to that), which triggers a chemical menopause. It’s not something I’m interested in doing permanently but it’s largely keeping my symptoms at bay whilst I wait for the surgery. Good luck with it all.

Sorry for any confusion, just reading when bonker07 said she had her 3 children and wanted to elect her surgery this gave me the impression her need is urgent. I had many chemical treatments myself but for the actual election of my hysterectomy I was just assertive with that part on the day of my consultancy appointment as to try something else or seem to wish to try would have further put my surgery on hold, I personally wanted the end treatment and had my history typed up so they knew I meant business at my appointment, thus left having signed my consent form that day to get onto the waiting list! By all means try the Zoladex in the meantime if you have that as an option and you feel it could work to alleviate some of the pain in the interim! I was past that and ended up just going private in the end.

Good Luck with everthing.

Helly.

Hi Helly,

Not at all, I'm definitely done with my baby making days! I'm almost 46 so could be heading towards menopause soonish. I'm a bit apprehensive about trying chemical treatments also, maybe I'll give them a go and then decide. I will ask for a second opinion from the Gynae surgeon on the day.

wishing you all the best

Hi,

Again, thankyou for replying to my post, sorry that you've experienced the same thing, but glad that I'm not alone.

Sensible advice and I know that I should exhaust every option first before considering a hysterectomy. I'm just fed up with this on top of having Ulcerative Colitis. I have no quality of life at present.

Wishing you all the best with your surgery

So sorry you also suffer with ulcerative colitis.

This isnt an easy journey. Best of luck ladies with the upcoming proceedures.

Hoping for a Better life for all of us x

H.

X

Hi bonker07. Wow 12 weeks what are your Haemoglobin and Ferritin levels like after that length of time bleeding? I bled for three weeks and my Haemoglobin dropped to 70g/l or if you prefer 7g/dl so I now have to go in hospital this week for a blood transfusion. GP wanted me in on emergency but we agreed that Friday evening would be manic and providing I experience no light headedness, chest pain or shortness of breath otherwise I had to head straight for ED. A good sign of anaemia in my present experience is the sensation of fifty foot soldiers marching around in unison in my head to the beat of my pulse. It is there every second of every day as my heart works harder to pump oxygen around the body, i am only unaware if I am moving around a lot or have the TV turned up.

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