Hi ladies,
My hysterectomy bso a year ago has unfortunately not cleared my endometriosis (had it in bowel/pelvic cavity attached)
........
I cant get over the disappointment I feel, especially as I was foolish to go private for it.
Ive hit rock bottom.
I feel like all I have to live is a life of pain and more pain, more dibilitation.
How do you ladies get through these black days.
Im being taken to terrible places in my mind.
Please help.
Love
Helly.
Hi Helly
I cant give you the answers but just wanted to say that we are all here to support you through your bad time just as you have been for us 🤗🤗🤗🤗
I think when i had my hyster it mentally gave me back control of my endo and so i completely understand why, now your symptoms have returned, you now feel so low.
It may be worth looking at your hrt? I still have one single ovary floating around inside so dont need any yet but before i had my hyster i was given prostap. Once on its own, when i had severe menopausal symptoms, and the second time with Tibilone. It made the world of difference. It was such an eye opener to see how a particular medication can help so significantly with these symptoms. Your low mood will probably be exacerbated if you are experiencing menopausal symptoms too.
What symptoms are you having now?
I too have fallen upon dark times through my endo journey and talking to others has helped to get me through it so if you need to chat im here to listen
Dawn x
Thank you Dawn - The Tibilone is right at the top of my agenda having had these very positive responses regarding same...
My Dr said he wd let HRT clinic approach this in July with me as its not his specialty.
Im having thyroid and hormone profile test done plus some other minerals etc he said he saw worthwhile testing.
Got an increase in my anti depressant I believe its needed...
Thanks so much for your help.
I was really touched and strengthened by the outreach to me here.
Your very greateful friend
Helly
X
Glsd you are feeling a bit more positive now they are doing something. It really is an emotional rollercoaster of ups and downs but with the help and support of each other we dust ourselves off and get back up again. You have nothing to lose by trying the tibilobe. I have/had stage 4 and my bsge spec swears by it. With regards the anti-depressants.. its not forever, so if it helps you through this rough time then its worth it. big hugs x x
Hi Helly,
I’m so sorry to hear how low you are, and though I’ve not experienced a hysterectomy I can completely empathise as I have hit rock bottom over the last couple months. I had my sixth lap in March and for whatever reason it flared up my bladder so badly - I had interstitial cystitis that had been in remission for 6+ years) that it’s taken literally until today (nearly 8 weeks) to pee properly and be able to sit down for any length of time without considerable discomfort and pain. My brain has been to such places I didn’t even know I could feel so low, so I do get it 
I’m just starting to pull through and the thing to remember is that you’ve got through all the hard times ever put before you, you’re strong enough to get through this and it will get better. I think I inadvertently wallowed in my own spiral of sadness for many weeks following the op and, although necessary, things only started turning upwards once I started to focus on the positives.. even if some days they are very small!
I do find a good plan helps. Could you go back and see your consultant? Could you google specialist endo consultants in the area? Etc. To feel like you’re taking back some control.
Are your friends/ family aware of the pain you are in mentally and physically and do you have someone to talk to? I see a psychiatrist every week to come to terms with all my diagnosis and the absolute train wreck that has been my mental health over the last few weeks. It really helps.
Please know you’re not alone, we are all here doing battle right beside you and will be cheering each other on every step of the way. Biggest hugs xxxx
Thank you Catness.
I appear to have been mirroring your mental state, pain brings us to such desolate grounds and having the support of you ladies in similar fields really comforts one, to know we are not alone in this.
Ive felt such a failute to my husband and son and feel Im a spectator in life, not a participant.
I believe I was a bit heightened during a period of counselling for PSTD also and I was not coping the best in my heightened state.
Thars calming down now thank Goodness.
Got a great new fresh young Dr whos doing thyroid retest from last years bottom of the range results and hrs doing hormone profile plus minerals etc.
He was extremely good, checked up on my referrals to colorectal and endometriosis clinic too so all that is in the far off (unfortunately) future yet its in progress.
Thanks so much.
I hope you continue to find the resolve and strength to stay afloat of this calamity life of pain and operations.
Ps, there is something in that the surgeries sometimes trigger us off almost worse than pre surgery my bowel 14 months on has neber been the same since the shave and it took extremely long to settle.
X
It beckons is surgery always the best option ie if its not deep infiltrated etc.
Im interested in the answers on my thread surrounding Tibilone HRT.....
Very interested to try in.
Helly!
Hi, firstly I hope you’re having a better day today 😊 I wanted to reply because I’m in a similar situation, I had my total hysterectomy last July, they removed the endo from my ovaries, but unfortunately it’s back, even more painful than before. Last week I went back to see my surgeon, he went through my options, like pain control until I go through the menopause (which could be a fare few years yet) the injection to shut down my ovaries (Which give you menopause symptoms) or surgery to have the ovaries out. This is/has been a very hard decision to make, but talking it through, I think quality of life wins. So I’ve decided to have the surgery, I know I will go straight into menopause, but I’m going to go through that at some stage, to help me through the bad days before surgery (which could be the end of this year, I’m on the waiting list) all I keep thinking is, I should be pain free and I can start controlling how I want my day to be, rather than the endo taking over. I hope this reply helps you in some way, you are definitely not alone, the support on here from other ladies is amazing, so if you ever feeling down, just type a message, this is not going to beat us! Big hug 🤗 xx
Big Hug,
There are ladies who report years free post hysterectomy before symptoms return, one said 4 years, Id give anything to have had 4 years worth after mine of maneagleble pain but unfortunately for me this is not the case.
Maybe Il report differently aftet trying the Tibilone hrt from July...it could only be an improvement from my sore exhausted sweatty self.
Hysterectomy is not a cure more a management strategy, the fact I don't get the bleeds and cyclical pain alone for me was worth our hard earned £5k price tag yet its very hard when still in pain and debilitation to justify that cost.Its averagely 2.5 to 3 year wait list in the nhs here in Northern Ireland
.
You have to make the decision based on all of your current symptoms.
If I got my hrt sorted Id be in a better position to comment I suppose but right now Id say Im still on the glad I done it side as apposed to not, though not glad we paid, not that glad yet lol.
X
Helly.
Good luck and always here if you need a chat.
X
Hi, just wanted to find out how you are today. You are not in this alone. We are all at different stages of this cruel disease. You can’t give up, please go and bang on your drs door. They have to help. Let me know how you are, xx
Hi Gwen
I banged on that door.
Feeling alor more positive for it as had full bloods taken etc.
Please see my more complete replies above without trying to bore you all by repeating myself.
Thanks so much friend.
Helly. X
So glad you banged on that door!! Never give up. I know sometimes it is so debilitating. It has taken me 25 years after hysterectomy to arrive back at the point where it all started, I even get period pains! There is no way of getting away from oestrogen. Bloody thing is everywhere. I really hope that tibolone will help you. It has improved it for me. Good luck. Remember we are always here.
Have a look on Nancy’s nook. Loads of info there too. Xx
Thanks so much Gwen, Gwen my consultant looked at me like I had horns when I was telling him I had pain following a cyclical pattern bith when Id be due to ovulate abd due on a period. Every single 15th of the month I get ghost ovary pain and its exactly in the spot the stabbs would hit me pre hysterectomy. I woke up being stabbed 4 times in the right ovarian area only about 6 weeks ago, the last time I trialled comingbl off the progesterone tablet as with my 1st trial coming off it the symptoms were back ten fold.
It was almost as it my consultant thought I was questioning his surgical skills, he was trying to seem really adamant that it couldn't have came back in 14 months.
Tibolone is my next port of call Im 5 months on estrogel and feeling like a car crash lol.
Thank you.
How sad that you are at this stage of your life with "menstrual " symptoms - to be a woman in this life is truly to carry a cross.
Are you trying any diet based approach?
I dont consume alot of red meat, very very little and Im not big on dairy, I believe these are estrogenic foods.
Yet Im on the highest dose of estrogel so I dont feel like someone about to be locked up for stealing the Queens jewels. Im exactly 40
Happy birthday to me and welcome to the new debilitated version of yourself.
I cant accept it.
Thanks so much
Helly
X
I can’t understand why drs are putting women with a history of endometriosis on oestrogen. I know it is a dilemma as myself was 32 so would go straight into menopause. The consultant in Cardiff said we never put anyone especially with stage 4 endo onoestregen. My husband and I were flabbergasted!! Not only was I on it but for 20years. Unbelievable isn’t it. Such a simple thing too. Good luck with tibolone. I’m still in pain but it’s bearable not an angry pain if you know what I mean. Take care xx
Tee hee, Gwen
Mine is angry alright, its venting through heavy metal rock music tonight, I needed some form of distraction for this angry gnarling crushing bone feeling in my pelvice area.
Im half demented today. Ive not been able to do simple tasks Im resting lying down when I can.
Its lucky I have the sense of humour I do to make light of the situation.
Ive given a middle finger salute to my pain tonight.
Today all sorts of feelings, why me, am I being punnished for something, is it the cross Im bearing for being one of the lucky ones who actually conceived and gave birth.
Is this gonna strip away everything important to me through sheer pain and not being able to cope.
Its quite horrendous really.
Thanks again
Helly.
Well I guess I spoke too soon!! The bitch is back 😡. I have been good for a while. I thought tibolone was helping but it’s back with a Vengeance!! I can’t get comfy in bed as I feel like I have a fist in my back so I have got up for a cuppa and a smoke.
It did sound too simple I must admit when the consultant said it may work. My only other option is excision, he said the op was brutal and would take 4-6hours. I will have to think really hard about that!! The thought of surgery at my age!!
God you have to have a sense of humour to deal with it. I feel like my inners are falling out. And there ain’t much left to do that. Ffs will I ever feel normal. Take care and keep in touch. Xx
Gwen Ive been describing mine like a boot in my back, like a boot in the tailbone area (or right or left)
Pushing in, grinding at the very inner of my bones...
Its gnawing dull and relentless and 14 months post Hysterectomy my abdomen reallt hurts even doing simplist of bending over type chores.
Im on Pregabalin 75mg x 2 a day topped up with ibuprofen and co-codemol for a bit of relief (plus heat patches on the area.)
What age are you if you dont mind me asking?
Im in 2 minds about surgery.
There is a part of me feels since the hysterectomy 14 months ago that going in there just aggrivates anything that the surgeon missed or failed to remove, Ive bowel problems I didnt have prior to surgery.
The only benefit I can safely say I have is no bleeding no monthlies.
Im still getting stabs and ghost pains where bits were removed especially around my right ovary area.
Ive terrible loud flatulence now and
The bowel just hasn't settled quite right yet.
I had it exised from bowel.
Have that smoke and cuppa!
God knows lady you deserve!
Helly x
Hi, I am 57. I’m on pregabalin too. 150mg 3xa day also dihydrocodeine and amitriptyline. And still got pain! Also trying cbd oil in vape. Don’t think it’s doing much.
I only just discovered that no endo was removed during hysterectomy but wasn’t told. So angry with my surgery. They must have realised I still had it and not just that left me on oestrogen for 20 years. It’s unbelievable really.
Really nit sure whether to have surgery or not. Will have to have think really hard about it. So much could go wrong and what if I’m worse than I am now.
Take care xx
I am sorry for your pain. I send you all the love and healing. I truly hope you find the physical and emotional relief you seek to live the life you desire. In the meantime, maybe you will find comfort in long embraces, a shoulder to cry on, bubble baths, meeting up with your funniest and most compassionate friends, a trip to the beach or any trip at all. Basically anything that helps you disconnect from the anguish and re-connect with joy, love and the promise of a new tomorrow.
All the love,
Mar
Beautiful words you are a very kind hearted person.
Thank you.
Helly. X
I know it's mentally draining to have to keep putting up with all these symptoms when you finally think it's over, especially after having a hysterectomy. I would say your hormones are probably going to take a while to settle from having a hysterectomy and then you might not feel so helpless. Also if you can take something temporary that they may offer you might give you a respite to get yourself back on top. How has it grown back. My consultant was adamant that without periods my endometriosis would not be back, but making me think yes it can.
All the best
Hi Charts
Apparently our residual glands and stroma have estrogen receptors and progesterone too.
estrogen is supposedly a feeder of endometriosis.
We even have estrogen in our tissues plus in my case my hrt plus our foods can contain it so the cycle continues. Progesterone is supposed to help cull it, keep it at bay but the medical jury is supposedly out on much of how it persists and or regenerates itself.
So I could have potentially fed mine with hrt but without hrt Im like a car driving in the dark without headlamps!
I need estrogen Im only 40.
Lots of professionals dont have the level of education on this topic we wd hope they shd. Retrograde mentration is only 1 theory more part of how it could possibly start and persist yet
How does that explain the ladies having flare ups who no longer menstruate!?
Not enough research is being done there are not the funds like as in some of the other big ones like cancer. Its such a pity as potentially it affects humanity the fact that for so many of us we struggle to reproduce etc. You would think the powers that be wd make it a priority to have us women fixed of this terrible burden..its a life stealer. We need a cure.
Good luck
Helly.
Wow it really do grow back regardless for some. It really has such a impact on your life. I'm having a MRI done privately intrigued to see if anything is going to show up. I so hope they can find a cure very soon. I believe by upping the antidepressants will help also. Thanks for your reply
Dear Helly,
I have been looking into the link of endo and nutrition, so much of the what we eat has hormones, estrogen in particular. There is a belief that more and more women are experiencing endo because everytime we are less healthy and conscious of what we consume. Not only what we eat, but the cosmetics and creams that we use are also toxic. You can watch this video: youtube.com/watch?v=CdjNcrx...
If you have not addressed the Endo through a nutritional perspective, it might be time to do so, considering that you have gone through a hyster. Just a thought 
With kindness,
M.-
Thanks so much
I have begun to take a massive interest into the nutritional approach.
I need to do all I can.
Thank you for the video link I will watch this for sure x
Helly
X
Blood from bottom when on period
Numb, tingling bottom
Bottom pain
Urgh, pain/discomfort up my bottom!?
