I have suffered for the last 11yrs and have various tablets injections ops all fail. But I now have to try Tranixamic acid and mefanimc acid one last time for 3 months, I am on my last month of them and awaiting my follow up with the surgeon. I am at the stage now where I am in constant pain. and when it comes to flying the flag you might as well take me out into a field and shoot me. I am either found laying on the sofa or laid on the kitchen floor when i have an "attack" and it depresses me hen my 7yr old son gets the pillow from the kitchen cupboard and places under my head for me and sits with me. It makes you feel so inadequate as a person and a mother. I have always said if i didnt have my two beautiful boys I would have done myself in years ago. It doesnt seem to sink into my surgeons tiny brain that my son has missed days off school or been late because of these episodes, i do not and have not felt like a "normal" woman for the last 11yrs and in the last 5yrs have not had a proper sexual life, ok so sex isnt everything but hey would like to experience it without having to take painkillers and it having to be my "dopey" ones at that.
Is there anyone out there that is going through or been through similar situation. I like to think myself as wonder woman as come on ladies we all do sometimes and i joke the episodes away, but as I find myself so close to final hurdle towards getting a normal life the years have take there toll on me and find that all the emotions are crashing down on me.
so please ladies I would like help and be able to talk with someone who is or was in the same situation
lindsay xxx
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limbiloo83
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You are not alone! Yesterday I was in the ladies toilet (at my work) for half an hour! The pain was unbelievable! I sat on the cold tiled floor doing my breathing exercises, but it didn't help at all.
I do not have any children and I am 34. I just want to get rid of this endless pain. Like you, my sex life is 0.1. If anything happens, it is usually foreplay, but nothing else. It is impossible to have intercourse the normal way.
So, like you, I am looking forward to a hystorectomy, but I am still waiting for my invite to see my gynaecologist (second opinion!). I wish the specialists would understand what we are going through!
I hope you feel better soon and I hope that one of these pie-brian specialists will help you properly. Take care - Wendy
I can relate to exactly what you're going through. I was diagnosed with endo 10 yrs ago. I've been on so many types of contraceptive pill, the implant, depo injections, the merena coil and now GnRH injections. I asked to have a hysterectomy and the consultant told me I could 'get that idea out of my head'. I've had 3 laparoscopies and am going back to see my consultant at the end of August. He told me he wouldn't rule out a hysterectomy based just on my age (almost 29). I am very lucky to have two little boys who are nearly 2 and 3, I just wish I had a better quality of life. My sex life is now practically non existant and I feel so guilty, luckily my husband is very understanding. I suffer for 3 weeks out of every 4 and never have any energy. If I could give myself a hysterectomy I would! The thought of having to put up with this 'til I go through the menopause makes me really depressed.
thank you so much wendy and ginger. I am so sorry that you are both going through this as well. It just amazes me how much they let you go through before they consider anything, i am still convinced you have to be a sadist to become a doctor
They were quick to allow me to be sterilised at 26 my reasons were i didnt want anymore kids I have two boys but unfortunately 2 pregnancies that never managed to go to full term, and I thought it would help towards me getting my hysterectomy.... our survey said.... yep you guessed it grrrr. My surgeon has already gone through the way he would do the hysterectomy (vaginally) at which point I crossed my legs and whinced, but turned out after my little m.o.t in april and several plumbing works he still wanted to try the tablet option one last time. I will be stating the requirements for a patient that qualifies for a hysterectomy when I see him again and state I tick all the boxes. But im still worried that he wont do it because I "might" meet mr right and he might want kids (his words) to which my response was "unlucky for him them" I feel as though he is putting a strangers needs, someone who I have not not met yet or never meet before my own health well being and my ability to be a proper mother to my kids.
I think its time those doctors spent just a week in our shoes to fully understand what we are going through. I have promised my friends not to kick my doctors testiles into his body and turn round to him and say "what you moaning about take a tablet and get on with it" lol
went to consultant yesterday,adhesions back,am having a cystoscopy on 20 july,and an mri before that,if he can find endometreosis will be on list for hysterectomy with abit of luck.Just had third menopause injection and found lump that hurts and a funny line in lower belly,is that the adhesions I wonder?Only just dared feel 2day as pain ebbed a little.Feel like I have been crying since april when admitted to hospital, as I choked on my own vomit whilst uncouncious through pain,this is my third time with endo,this time its bad I upset my husband as I asked him "why did u revive me".Will it ever end?
I know exactly what you are going through. I have also suffered from the age of 12 and just thought it was normal because i didn't know any different. I was finally diagnosed (after being tested for every possible illness & being made to feel like it was all in my head) 3 years ago at the age of 35, since then i had almost every possible treatment & was told last august when i asked for a hysterectomy that i was far too young even though i have 2 children aged 11 & 14. so i was put on yet another hormone treatment which i had a severe reaction to but turned out to be a blessing in disguise as my gp got me an emergancy appointment with the top gyny consultant in our area. After a rather painful examination his advice was if i wanted any quality of life then the only option was hysterectomy although he openly admited that i would never be pain free but around 80% better . So on 9 may i had a total laperoscopic hysterectomy with my overies & tubes removed, apparently when he operated 'it was very interesting inside' as my left ovary was stuck to my falopian tube and my bowel and it was a complete mess. 6 weeks on while i'm still experiancing some pain from the surgery i feel a lot more positive & well on the way to recovery. I have refused to take hrt due to the fact that it can make the endo come back & i am starting to get the hot sweats but i shall find a herbal remedy that works along with the calcium supplements for my bones etc. i'm back to see the consultant tomorrow which i'm nervous about as i have had pre cancerous cells removed 3 times & i wouldn't be at all surprised if they had come back again. I know some people say hysterectomy is not the answer but when you have no quality of life you will try anything and at the moment i don't regret my dicision. Good luck :0)
With you and fighting a similar battle have coped and functioned as best I can overcoming the pain and dealing with it for fifteen years I have hit a wall and have been fighting since last September for hysterctomy now jave a nodule in the bowel so will need a resection also feel very let down at the moment have gone to patient advise and liaison for help they are trying to help.. I know what you mean when you say you feel you are letting your kids down I feel the same I'm now off work and that has also made me feel like im letting people down its harsh but you'll get through it xxxx I keep hoping thay the succsess stories o hear are going to apply to me try and stay psitive try pals see if they can help x
Ive always made jokes to get through the episodes etc, one of my friends has a pillow in her kitchen for me and recently bought me an anyway up cup so I can still enjoy my cuppa when I have an episode because I always complain that I miss out on my brew
But as you know the joking and brave faces can only last so long, and as I said I think its a case of im getting so close to finish line it has finally taken its toll on me xxx
You certainly have put up with a lot and its not surprising you've reached the end of your tether with all the pain and treatment options.
At your next appointment if I was in your shoes I would push the poor quality of life you have at the moment and how you feel this would be greatly improved after a hysterectomy.
It is no fun being in pain everyday and not being able to join in normal things that your friends are doing. By all means it is reasonable to state to your consultant that you know a hysterectomy does not work for everyone but you feel that the time for you has arrived as you have exhausted all other options.
Good luck that is exactley what I have said i was told push on the quality of life thing,am hoping it will work for me.Consultant says he will make decesion 2oth of july when all results in.
@ LittleMissManx I told my consultant at my appointment before my last plumbing work and mot about how my son is always late because of the late nights I have because of the pain and how I cant afford to keep getting taxis to take him to school, his school is only a 10min walk from my house as well.
I really do hope that now I have agreed to last shot at the tablets because when I came round and was told the combi tablets for 3mths I told them that that was the last thing I was prepared to do and "when" they dont work I want back in for them to take that damned thing out and give me my life back. Hopefully though love he will do it as the tablets havent worked as I said they wouldnt but I have to show that I am willing to try one last thing. The one thing that always makes me laugh when I go to appointments is I can point out my files straight away as they are that thick, even the consultant was surprised by it, only 3 pages are to do with non gyne ha ha ha, I love being special
@littlestar I really hope your consultant decides on the hysterectomy love, please let me know what the out come is and feel free to talk about it if you want. It is always nice to talk to someone who is going through the same thing and help each other through the journeys we are facing at the moment xx
@ pearlavery I hope you manage to break through that brick wall love, it is just a shame we have to get to the stages that were at for them to do anything about it. I looked into pals and found a site that gives the NHS criteria for a hysterectomy so I will be going armed with that as well xxx
@CLS1 How is the recovery going love? Have you noticed any changes or are you still too sore from the surgery to tell.... Make sure you take it easy love dont over do it xx
recovery not going too bad thanks, I have some bad days but most are good as long as i dont try to do too much. Been for my follow up appointment this morning & apprently it was a very difficult operation because everything was stuck together on my left side & i had a 5cm cyst on my right ovary but all hystology tests have come back clear which the consultant was amazed at & i am estatic. He has told me he now wants me to start hrt as he thinks the risks of the endo coming back are very slim and i really need it as i am classed as very young to have my ovaries taken out but i am going to do some more research before i decide.
Even though its still early days i am sure i made the right decision. i could not of carried on the way i was before with no quality of life and even if i do still get some pain it cant possibly be as bad as it was. My husband has already said he can see the 'old me' coming back so thats got to be a good sign ;0)
Hey sorry it has taken me so long to reply, It has been an awful time. Awaiting to hear if the big cheese consultant will let me go on prostap again until my appointment and hopefully they will bring it forward. Then maybe just maybe they will bring me in and rip the thing out!
Had a bad relapse only just getting my energy levels back today. Not happy about the painkillers they have given me so just taking less zombiefying ones to get me through and just take the god of painkillers if it is really needed.
I feel like a 90yr old at the moment, my back and hips have been a nightmare at the moment, it is the worst it has been in a very very long time. Im in a catch 22 moment.... As if I move too much then my womb plays up to high heaven but if I don't move enough my hips seize up.... Hey ho put a smile on my face (even bigger when I have my zombiefying painkillers) and carry on until they decide to make me normal again lol.
Im so glad that your recovery is going well CLS1, keep taking it easy hun, before you know it the old you will be back in no time xxx
Ladies I am sorry to hear your pain, like you I was sck of this pain and thought a hysterectomy would solve my pain probs HOW WRONG WAS I, I had a subtotal (everything but my cervix removed) hysterectomy last year in march, I am now awaiting an iliostomy in Nov 2013. all im saying is a hysterectomy doesnt take it away it just slows it down, sorry to bring the bad news but felt i needed to say it. that being said it does help some ladies pain but it still comes back girls I really dont know what the answer is but i do know that for us all to look forward to being opperated on it just goes to show how bad this is.
Please take care snuggle up with you hot water bottles and get rest xx
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and i joke the episodes away, but as I find myself so close to final hurdle towards getting a normal life the years have take there toll on me and find that all the emotions are crashing down on me. 
only just getting my energy levels back today. Not happy about the painkillers they have given me so just taking less zombiefying ones to get me through and just take the god of painkillers if it is really needed. 
I have had more reliable information from this site than I have had from any doctor I have ever seen. Why is that?
Alternative pain relief
Doctor trying to scare me out of getting a laparoscopy 
Endo diagnosed, treated, now have fundal intramural fibroid causing havoc, 42 & not sure what to do next. Any experience?
A letter to the people around me....
