sanchia465 years ago

Endo can come back. There is no permanent cure unfortunately

Sweetyassi in reply to sanchia465 years ago

Hi,

Thank you for responding to my question. It’s strange because i’ve been told by my surgeon that he removed all endo and that it can’t return and it’s now been 6 months after my operation and I can feel my symptoms coming back.

Sweety.

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sanchia46 in reply to Sweetyassi5 years ago

Strange as that’s not accurate. It can grow back and that’s why it’s known as an incurable condition.

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Sweetyassi in reply to sanchia465 years ago

I should know all this after suffering with endo for 10 years and had numerous operations I just keep forgetting that it can come back.

Don’t know if I can cope anymore fighting endo i’m so worn out.

Sweety.

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sanchia46 in reply to Sweetyassi5 years ago

Yes I’ve just accepted that it’s here to stay...

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Northernmonkee1 in reply to sanchia464 years ago

It's totally rubbish isn't it ? and so annoying when people don't get what a complictaed condition it is. Arghhh xxx

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Sweetyassi in reply to Northernmonkee14 years ago

Hi,

I agree with you it is rubbish. Doctors and surgeon think they know everything but they don’t. I’m trying different things now, I have noticed that eating eggs are causing me to have infection in my bladder and bowels. So not only do I have to avoid Gluten, wheat, dairy, red meat and soya I now have to avoid eggs. Eating is becoming stressful.

Sweety.

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shezza155 years ago

Im not sure about menapause hun, but yes endo can return, with every bit of blood loss no matter much there is a chance of endo returning, also even though you had you overies removed ypu could of had endo in other places that needs treating, i had both fallopian tubes removed, then wrnt back and had one overy removed then had to go back for further lazor treatment to remove the rest of the endo, several years later im suffering again, this time endo has latched onto the bowel, a nasty and painfull time. Try to get some advice hun.

Sweetyassi in reply to shezza155 years ago

Hi Shezza15,

I’m meeting with my consultant in February. I saw him him in November and he said he removed all endo and adhesions and unstuck my bowels. Usually after any operation that I’ve had in the past the endo returned within a few weeks. This time when I had my operation in August last year I was pain free for 5 months but now my symptoms are returning. My hubby keeps telling me that once the ovaries are removed then the endo won’t come back. My consultant said that any endo left behind will die or shrink once ovaries are removed.

I feel so lost and confused with all this people telling me different things.

Sweety.

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katrina12345 years ago

Morning? I had a total hysterectomy and excision of yet more endo in February 2016. I needed further excision July 2017. It’s such an evil disease. X

Sweetyassi in reply to katrina12345 years ago

Good morning Katrina1234,

Having endo is not nice at all, it’s so depressing. I’m so confused by some information that I was given. Even reading online isn’t helping me.

Are you going through menopause?

Sweety.

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katrina1234 in reply to Sweetyassi5 years ago

Hi,sorry for the delay in replying. I have had a weekend in pain and just sat on the sofa feeling sorry for myself.

I went straight into a surgical menopause. I already had experience with the hot flushes due to being on Prostap with no hrt. I have been having problems with sleep and mood but I saw the Menopause nurse specialist last week and she said I was put in the wrong hrt by the endometriosis specialists! I was on oestrogen only hrt and not a combined one to help suppress the endo. I did ask my consultants and they both said the endo won’t grow back!!! Well it did.

I don’t sleep well mostly due to the pain but my gp is helping me to find the best combination to help.

How about you. Are you in a lot of pain?

Katie x

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Sweetyassi in reply to katrina12345 years ago

Morning Katie,

I think us ladies are entitled to feel sorry for ourselves once in a while, look what we all have to put up with.

I’m in pain but I can also feel something around my bowels, on my bladder and sex is becoming painful again i’m bleeding again after intercourse. I’m not sleeping well, not eating well, feeling depressed. I’ve been told by my consultant, GP and hubby that all the endo was removed along with both my ovaries. I’m getting hot flushes. I’m not sure if I’m feeling adhesions inside me or endo if missed by my surgeon. I’m not taking anything HRT yet as I’m waiting to see my consultant. I’m worried about taking HRT in case endo comes back. My consultant who is an expert in endo said endo will not come back now. But I have a feeling at the back of my head that endo will/is come back.

Did you get all your endo removed?

Sweety.

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Adrianna5 years ago

I’ve had a total hysterectomy, on hrt. I thought it had come back... but in my case it was adhesions from all the surgery for endo that caused me to have a bowel resection.

Sweetyassi in reply to Adrianna5 years ago

Morning Adrianna,

I can’t go on HRT because of my past situation with endo. Maybe I’m panicking for no reason and it’s just adhesions causing me pain.

Sweety.

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Hidden5 years ago

Hi, it is such a confusing condition.

I joined a closed group on facebook after being diagnosed with stage 4 endo a couple of years ago. It is called Endorevisited UK Support and Education Group. I have found it to be hugely informative as well as supportive. The questions you are asking have all been extensively discussed within the group so it may be helpful for you to join.

Hope you get some answers soon. Take care xx

Sweetyassi in reply to Hidden5 years ago

Hi Sidney_99,

Thank you for responding to me. I will definitely check it out. I’m going to be so disappointed if my endo has come back.

Sweety

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Adrianna5 years ago

I thought the same but apparently it may or may not bring the endo back. From what I understand even without yr ovaries yr body can still produce oestrogen. Oestrogen is also found in food though don’t know specifically what food.

I really believed I had endo come back & had to bully my consultant into doing something. I had all the symptoms I had before the hysterectomy. I had to have hrt as was fairly young in menopausal terms to not have it, I was really worried about it returning. Have had an in-depth conversation with my pharmacist about natural products.

Turns out consultant was right, he found no endo!! Thank god !!!! Been through enough!!

However my bowel was a twisted up mess because of the adhesions, hence resection. Oh & the best bit of news... not!! It could happen again!! As with every surgery it causes adhesions.

So unfortunately I do still worry about endo returning , it loves scar tissue & oestrogen.

Obviously I’m no expert & this is only what I’ve read up about online

Sweetyassi in reply to Adrianna5 years ago

Hi Adrianna,

Are you alright now?

When I was first admitted in hospital for an emergency operation in 2009 my bowels were twisted and I had endo inside my bowels. My bowels were damaged and It caused me to have Celiac disease. I’m worried about eating foods that have oestrogen in like soya, i’m Afraid of taking HRT tablets in case it causes endo to come back.

I’m now thinking after reading all these replies that it might be adhesions causing me these pains. I will speak to my consultant next month about all this.

Sweety.

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shezza155 years ago

Im sorry to say this about your hudband i dont mean anythin by it but its easy for someone who hasnt been through it to say dont worry, endo can return as the othef posts explained, adhesions can cause the same issues,and in my experience it has returned, its obvious somethin is goin on with you so continue pursuing it and get answers, this disease is orfull and seems never ending. Good luck hun,

Sweetyassi in reply to shezza155 years ago

Hi Shezza15,

No need to apologise. You’re so right, it’s very easy for people to say that it hasn’t come back when they are not experiencing it themselves. Me and my hubby are going through a rough patch but he seems oblivious to it. It’s affecting my health and my children are fed up with his moods and constant negativity.

I will be speaking to my consultant about my worries and how I’m feeling.

Sweety.

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shezza15 in reply to Sweetyassi5 years ago

This kind of thing puts presure on alot of relationships hun, incluedin my own, my patner of 20 years doesnt understand because he cant see it he feel like its not a problem and if i think it is then i should be in hospital or somethin, the strain on our sex life has suffered an apatently is all my fault, and the fact that im not as able to do most things like i used to an i moan in pain alot is not understood, i work, be a house wife an take care of my 7 year old, im still me, and i never asked for any of this, neither did you, the msn species getd off lightly compared to what us women go through, ha, sorry t hear things are not good for you hun but keep your chin up and good luck with the consultant.

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Sweetyassi in reply to shezza155 years ago

Hi Shezza15,

My sex life has suffered so much to, and have been blamed for it by my hubby. He knows how I am when I’m in agony still he wants sex so to shut him up I have sex with him even though he can see how painful it is. Slowly slowly my pains are coming back, sex is becoming painful again and I don’t want to tell him because things are already stressful at home. I wish I was working so I could do something about my situation with my hubby and kids.I understand, I still do what I can around the house clean, cook, take care of family. I had a complication during my surgery last year and developed compartment syndrome in my right leg and now I’m walking with crutches and will need further surgery to correct my leg.

Sweety.

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shezza15 in reply to Sweetyassi5 years ago

Im sorry to hear your situation hun, its not a nice thing foryou to be going through and im sure deep down somewere your husband can see your pain, i think there all a little selfish when it comes to sex as thats all they think about especialy when there not gettin much, it not nice tryin to please your partner when your in pain an dont enjoy it and it hurts us more when we dont think we are pleaseing them like we used to, but they need to understabd this isnt easy and we cant hepl it, we are still doing our best dispite what we are feeling, i would like to see them cope with things as good, keep your chin up babe an best wishes.

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Tink145 years ago

Hi, I had a hysterectomy in Jan 2015. Full abdominal with everything gone and put on hrt. Since then I have been on antibiotics depressants to try and help with the pain. Helped a bit but made the exhaustion and cloudy brain a lot worse so stopped taking them. I'm back to taking painkillers and using heat pads. I have been drinking red bush tea and that helps a bit. My GP told me that there is nothing else they can do as the gynecologists have washed their hands of me!!! Really hoped this operation would give me my life back but didn't work for me. Never heard of ladycare so will have a look into this. Hysterectomy does not cure this horrible disease, will work for some x

Sweetyassi in reply to Tink145 years ago

Hi Tink14,

Sorry to hear that you’re still struggling and in pain.

I’m thinking that The Ladycare wasn’t working for and made my hot flashes worse, since taking it off my hot flashes aren’t so bad but I can see feel something is wrong Inside me not sure if it’s just adhesions causing pain or that endo has returned. I’m getting pains in the same places I had before my operation. I’m not taking any painkillers because I’m sick of the way they make me feel plus they don’t work for me.

Sweety.

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Tink145 years ago

Hi Sweety,

I was told I had to have hrt due to my age but to be honest I think it makes the pain worse. Does stop the hot flushes which is a positive. The pain I have is exactly the same as before, wish I hadn't bothered having the hysterectomy. Really was hoping to get some normality to my life!! Guess we just need to keep going back till they do somerhing.

Regards

Claire

Sweetyassi in reply to Tink145 years ago

Hi Claire,

I had my hysterectomy when I was 36 years old, couldn’t handle the periods, pains, heavy bleeding used to faint every month. I kept my ovaries until last year August. Now I’m worried about my bones, heart health because I’m Glutenfree and Dairyfree i’m missing out on some nutritiant and vitamins. I can’t eat solid foods like every one I have to have more liquids like smooth soups which is annoying. I did regret having hysterectomy done because my surgeon said it would cure the endo and I believed him, I should have done my own research before agreeing to have it done.

Sweety.

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CJR995 years ago

My heart goes out to you all....I had a total hysterectomy in June 2017...found endo, fibroids and stage one Ovarian Cancer! No wonder I felt so crap! On a recent check-up with the gynecologist I explained my choice NOT to go on HRT at nearly 46...I was concerned the extra estrogen would affect my endometriosis and preferred to follow the herbal route. She explained,"my endo would never come back as I had no ovaries now," mmmmmm sadly not the case. Whilst I am doing so much better, I have some problems bowel wise and I'm now concerned endo may be returning to this area.

However, for anyone reading this and contemplating a hysterectomy for endo my thoughts:

Massive op and surgical menopause is very tough

I am predominately pain free, after years of miscarriages and heavy bleeding

I lost a 18lbs after the op and have returned to a comfortable size 10

A little endo has probably returned but, wow it's much more manageable than before the surgery and all the pain I had previously

Best wishes,Clare X

Sweetyassi in reply to CJR995 years ago

Hi CJR99,

Glad to hear something positive that you’re managing the pains. Boy, you went through hell.

I remember when all my organs were stuck together covered with endo and adhesions. Now I’m going through menopause and I’m still in pain not sure if endo has returned or if it’s just adhesions that I can feel. I’m also bleeding again after sex and it’s becoming painful again. Oh the joy of being a woman with endo, no joy at all. I’m worried that the surgeon might have missed a tiny bit of endo somewhere. I hope i’ Wrong but all these years i’ve never been wrong about what’s going on inside my body.

Sweety.

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angellllll5 years ago

Hey there! I hope you're feeling better. So sorry to hear about your current situation. There is no proper way of treating endometriosis. Sometimes endometriosis does go once you enter the menopause stage but can eventually come back once you're on your HRT. But that is rare. If endometriosis has developed outside your ovaries then there could be a problem. There are chances that it might not have been fully treated and could still be present. Therefore, I would suggest you get yourself checked by another doctor. As sometimes different doctors and different labs give different results. I hope it gets better! There are certain medications one can take to improve the whole scenario. All my warm wishes are with you. Do keep us updated.

Sweetyassi in reply to angellllll5 years ago

Hi angelllll,

Thank you for responding to me.

I’m planning on getting a second opinion after meeting with my surgeon. Plus I might sue the hospital of negligence. I had to have 4 unnecessary operations on my leg. I went to have my ovaries and endo removed and came out of surgery with compartment syndrome and had to have 4 operations on my right. Now I’m walking with crutches and might need a 5th operation on my leg. I’m not happy. I don’t only have to deal with my pains in my stomach I also have to deal with my leg pains.

Sweety

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Adrianna in reply to Sweetyassi5 years ago

Did you have a fasiotomy ? Spellings not right I know xx

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Sweetyassi in reply to Adrianna5 years ago

Hi Adrianna,

I had a laparoscopic adhesionolysis and bilateral oophrectomy.

After my surgery I had a rare complication called compartment syndrome, I then had fasicotomy.

Sweety.

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rizziejack5 years ago

I've had one ovary removed but haven't been checked since then to confirm if endo returned. I do know that when I eat foods not recommended for women with endo, I do start to feel affects of the endo. When I stick to a strict diet, it helps a lot. It sucks, but so does endo so if I can do anything to help it from coming back, I will. No alcohol, no gluten, no dairy, no soy... there's a lot online to help with an endo food plan.

Also, acupuncture and castor oil packs along the uterus and liver has helped me. Congested liver will store up excess estrogen making it sluggish.

I hope these tips help you out and you feel relief soon.

Sweetyassi in reply to rizziejack5 years ago

Hi rizziejack,

I’m already on a Glutenfree, Dairyfree, soyafree diet due to endo damaging part of my bowels causing me to have celiac disease. I have problems eating any kind of solid foods, most of the time I’m on a liquid diet and it sucks big time when your family are eating something delicious and you’re sat next to to them drinking soup.

I’ve tried acupuncture and castor oil, nothing helps me. Not even painkillers I feel like I’m one of the unlucky ones. I hear some women find relief with some meds and there’s me, nothing helps there must be something wrong with me that nothing works.

Sorry I’m feeling depressed and let down by all this.

Sweety.

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