Suspected Endometriosis 4 years after full Hysterectomy

[CrazyCatMother]

Hi everyone, I'm new here and I had no idea where to find help - I mainly want to know that I'm not alone...as cliche as that sounds.

I had Adenomyosis and endometriosis for years, and had a full Hysterectomy when I was 29 (4 years ago). Things were amazing and I was finally pain free for the first time I can remember in my life! Then last year I started feeling occasional twinges of my original pain.. I was devastated and couldn't tell my husband as he had gone through so much dealing with me being in the pain that I was.

In a nutshell it's got worse... I couldn't walk today because of the agony- I got home from work and just went and curled up in bed. The doctor I'm seeing now is so sympathetic for once, and she referred me for an ultrasound - where they told me cheerfully they couldn't see anything and I was in great health 😑.

I'm being referred to the gyno clinic, but she's said (which I've heard before) that it can take a long while to diagnose and treat endometriosis... Which I should mention my doctor fully believes it is, possibly on the scar tissue from my operation if they didn't get all of it to begin with.

I'm mainly writing here as anonymously I can get my feelings out without having people to just tell me to "drink more water and you'll feel better" or have my family make "aw sorry" and not know how to deal with it.

I'm really sorry for the long post, but has anyone else had any problems with a resurgence of endometriosis following a full hysterectomy? (cervix, uterus and ovaries)

(to be honest, yes I'm in tears just being able to get how I feel off my chest but I'd this isn't the right place then just tell me to naff off)

[Catness]

I haven’t had a hysterectomy but I just wanted to send hugs

Is the gyno you’re being referred to a specialist endo clinic? It may be worth seeing if you’re being sent to a specialist centre and if not maybe asking if you can go there? You can look on this site for your nearest location: bsge.org.uk/centre/

In the meantime to help with pain have you looked at your diet at all? The endo diet helps to manage my symptoms.

I’m sorry you’re in such a bad place, please know you’re not alone xxx

[CrazyCatMother in reply to Catness]

Thank you xx

I'm being referred to the Menstrual, gynecological and pelvic pain clinic as the next stop. I've been trying to sort out my diet for ages, trying all kinds of things but I haven't looked at the Endo yet so I'll give that a go.

Thanks so much for just being another person who understands!!

[giget40]

I COMPLETELY get your pain, your frustration and emotional roller coaster you are going through. I am in screaming pain with endo right now. After 2 or 3 laps. Then a hysterectomy- I kept my ovaries though- and the pain is back. 6 years later but back just as bad. Keep your head up. For me diet, water did not help me at all. Keep me posted. Blessed be

[CrazyCatMother in reply to giget40]

It's affecting everything and really not helping my mental health- the worst is just not knowing anything or having anything specific that can help! I'm so sorry to hear you're going through it too, but thanks for your support xx

[Pinkyandthebrain]

I haven’t had a hysterectomy but I do know the sinking feeling of the pain returning after two operations. It may sound silly but I’m currently seeing a counsellor to try and come to terms with the fact that I’ll likely be dealing with this pain for the rest of my life - strangely talking about it seems to help.

Anyway, I’m sorry things are not good for you; it’s not fair. X

[CrazyCatMother in reply to Pinkyandthebrain]

That doesn't sound silly at all- I've been wondering if I should do the same, though not sure how I'd look going in there crying and feeling hopeless but at the same time knowing I'm stronger because if I can get through a day with this pain there is nothing I can't do. I'm glad there's something like talking that helps you, just keep going. Xx

[Tinkerbell16]

So sorry to hear your pain, I have recently had a hysterectomy November 2018, I am aware this can happen if any endometriosis cells were missed. See your gynecologist for further help. Good luck xxx

[Ki0330]

I am so sorry what you are going through. I had one lap and the pain came back few months after. I am taking vitamin c mega dose now. Feeling much better. Occasionally though I am taking visanne which giving me horrible spotting and early periods. But have no choice when the pain is bad. My specialist suggests me second lap but I am controlling pain now with vitamin c. So I will see how it goes. Hope it helps for you.

[Andypandy]

Hi I feel your pain, I also had hysterectomy in 2013 and ovaries removed in 2015, was ok then for last year had severe pins in my ovarie area. Rushed into hospital to be told I had cysts that are endometriosis and is pressing in my kidneys. Been to see consultant today who says it is reluctant to operate due to complications as my bowels are stuck and says its to complicated! But said to try injections to go into menopause, as there may be still a bit of ovarie left! I'm devasted

[Lauraendo]

Hi there. Im going through same thing as you. Due ultra sound scan 2 weeks time. Quiry endo after full hysterectomy 4 years ago