I have had a total hysterectomy including... - Endometriosis UK

Endometriosis UK

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I have had a total hysterectomy including ovary removal can it come back?

disneyanna
disneyanna

So February this year I had a major operation to remove everything ovaries, womb the lot. Plus bowel surgery. I had a stoma until August and I have recently had an operation to reverse it back.

Just the other day I noticed I had similar symptoms to when I had endometriosis. I’m very scared that it’s coming back? What are the chances?

31 Replies
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Yes. Unfortunately it can. You may find Nancy's Nook on FB helpful. It is a page all on endo and they have a great collection of reading material.

disneyanna
disneyanna in reply to Missy100

I don’t have a Facebook account ? How can it grow when I’m not making eostrogen?

Missy100
Missy100 in reply to disneyanna

The endo creates its own estrogen

disneyanna
disneyanna in reply to Missy100

I still don’t understand I thought endo starts to grow because of oestrogen ?

Missy100
Missy100 in reply to disneyanna

Sadly despite a hysterectomy not being a cure, and being proven not to be a cure for endo, many are still offering it as an alternative. There is no cure, only treatment and a hysterectomy is a drastic option for a possible temporary solution.

It does treat adenomyosis, but not endometriosis due to the endo producing its own estrogen.

It is beyond frustrating and angering that medical professionals are not better educated on what they are doing for a condition that is so wide spread. Have you considered seeing a BSGE doctor (endometriosis specialist) for a second opinion? You can look up BSGE facilities in your area and request for your GP to refer you if you continue to have issues. They should be better educated and experienced in treating the condition with the most up to date and successful methods.

disneyanna
disneyanna in reply to Missy100

I have had everything removed though

Missy100
Missy100 in reply to disneyanna

If you have had your ovaries removed it also comes with the chances that you will need to (or are) taking a hormone replacement which actually increases the risk of reoccurrence.

A hysterectomy only treats the endo that was growing on the removed body parts. If it is growing anywhere else on the body you will continue to experience symptoms, and it creates its own estrogen.

It is very easy for a surgeon who is a specialist in endometriosis, never mind one that isn't, to miss endometriosis growths because they are not always obvious and can exist over a number of body parts. They also require skilled excision to remove although many non specialists continue to practice ablation as a removal technique, which is like cutting the top off a weed without taking out the roots - it isn't gone and continues to grow.

disneyanna
disneyanna in reply to Missy100

I can’t imagine it would be growing anywhere else ?

Missy100
Missy100 in reply to disneyanna

Endometriosis is invasive and spreads. It can be found in many parts of the body including ovaries, fallopian tubes, between uterus & rectum, rectum itself, between uterus & bladder, bladder itself, pelvic cavity lining, and more. Some areas are more common and others more rare, but it does have the capacity to be really invasive and widespread. There will be women on here that have had it removed through surgery extending to their bladder, colon and more.

Missy100
Missy100 in reply to disneyanna

I find the FB group much more educational due to the consistency of posts and updates day to day and it is monitored. However nancysnookendo can be found online as a non FB page if you add a . Com to the end.

It is a bit of a rabbits hole with the sheer volume of information but you may find useful answers and guidance. It also guides you in finding an endo expert if this is something you want to explore.

Missy100
Missy100 in reply to disneyanna

I really hope you find a way forward that eases your suffering. No one deserves this.

disneyanna
disneyanna in reply to Missy100

Thank you

Missy100
Missy100 in reply to disneyanna

I wish so much I could honestly say it was different as I know what I've said must hurt to read, and I am sorry for that.

Hi

I saw the consultant a few weeks back about hysterectomy and I wanted to make sure he’d be checking everywhere and getting rid of any. He did say he would, unfortunately this wasn’t stated in the letter as part of the management plan so I’m quite nervous about it, his secretary did say he would and guidance says he should. I think it’s possible from research.

Can you speak to the consultant?

Have you had a hysterectomy?

Currently waiting, never thought I’d say this, but hopefully very soon. I’d always told myself never, technically shouldn’t be like this.

Hi, I must admit I didn’t think it could come back once your ovaries were removed, I’ve read somewhere that it can make it’s own hormones it really is the pits! I had a hysterectomy in 2016 they left me one ovary, and it came back, I’m having surgery tomorrow to remove it from my bladder and kidney and various other places it’s decided to grow. If your having symptom get yourself referred, I really hope it’s not because it sounds like you’ve been through the mill already with it.

disneyanna
disneyanna in reply to Trinabell

Hope all goes well for you. I really hope that it hasn’t come back

disneyanna
disneyanna in reply to Trinabell

Oh wow ok. Good luck with surgery

Hi, I’m sorry to say but yes it can. It all depends on your surgeon and whether it was all excised. I had total hysterectomy 25 yrs ago and am still stuck with it. I still get really bad period pains and debilitating back and leg pain. That’s my experience but we are all different. I feel really sad that drs are still saying that hysterectomy is a cure. I’m living proof that it isn’t. Why, is this day and age do we have to battle with the health professionals. Myself, I feel totally let down. Keep on fighting. Remember, you know your own body. X

disneyanna
disneyanna in reply to Gwen172

What surgery did you have? I’m sorry to hear that you are suffering

Hysterectomy many years ago. Been on a wild goose chase until 18months ago when I decided I couldn’t take anymore. Went to see bsge specialist privately and he said I very much still have it. Under his care now. Just last week had my appointment cancelled due to Covid so just waiting, it will be excision surgery but I’m pushing for a laparoscopy first so I know what I’m facing. 25years of pain is ridiculous. So glad I found this group, thank you.

disneyanna
disneyanna in reply to Gwen172

Did you have a total hysterectomy including ovary removal ?

Yes the lot out. I was 32. I’m 58 now! Bet I’ll be the oldest one in the hospital ward.🙈never mind, I know where I’m going and what has to be done. One of my drs said I couldn’t possibly be Endo and she’s got an interest in gynae. Really need to be more aware of what is involved.

disneyanna
disneyanna in reply to Gwen172

Oh wow ok similar age to me I’m 34. I have had a total hysterectomy. In February. What symptoms did you get back again?

disneyanna
disneyanna in reply to Gwen172

Did you take hrt after your op?

I was put straight on Premarin hrt. I stayed on that for roughly 20 yrs. though reading now oestrogen is no good for Endo and feeds it. Think I got that right but check with someone else. The pain never really went to be honest. I had to finish work at 40. It affects my walking. The pain is mainly in my back but goes down my legs and under my feet. It really is like a throbbing pain you get with a bad period. My womb was stuck to my bladder and was diagnosed with stage 4. Any other questions feel free to ask. I don’t want to scare you or put you off but will answer them honestly. X

disneyanna
disneyanna in reply to Gwen172

Mine was stage 4 and exactly like you womb was stuck to bladder. My ovaries were stuck together . One of my tubes damaged. Rectum was removed A mess.

disneyanna
disneyanna in reply to Gwen172

Yeah I have been getting f back pain. Leg pain. Slight ache when I wee. My lips on my face are red and sore which was something I got with endo.

Best thing I did was to see specialist private in bsge centre. And my advice, don’t give up. I felt like I was going mad. Be wary of hrt too. X

Hi

Hrt if used for a long period of time will affect the endo with its hormones

Also cause sickness,upset stomach etc to help with your urine use

natural products cranberries in tablet or the juice ,ginger helps sickness

As you are still young do not give up- one day hopefully us ladies

will be able to sort and source better help.

Life is full of surprises and good things do come to special people.

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