Back to the beginning :(

[Robyn17]

Hey,

Has anyone had the lap on die surgery and then still experience the same pain if not worse, months after?

I had my surgry last November, I was pain free for 2 months and thought, great it's worked.... after that the pain was back but worse. I have been to my consultations and explained that the pain is back. However I got told that because of who my consultant is and 'How good he is' there is no chance of it coming back and experiencing any more pain and that if there is pain then it is something else! I am really not convinced by this. Firstly I don't believe it was him that did the operation and secondly this pain can't now be just IBS pain. I would understand that it is IBS pains if I got this thought the month, but I don't it is when I am on. I have now been put on the pill to help with the pain but I'm not convinced that this is going to work. No amount of pain killers are working. I take naproxen, codine phosphate and paracetamol and nothing! I don't want to go to A and E as I just get told to get on with it, its just your menstrual cycle!!!

I feel like I am going crazy! It is affecting my work due to the amount of time I have off and also people at work are now saying that I am taking the mick with all the time off!

Please tell me I am not going mad and that others have/are experiencing the same things?

What do I do going forward???

By the way, I have changed my diet and I walk quite A lot I don't know what else I can do anymore!!!

Thanks in advance xx

[steph_D]

Hi Robyn,

I am in the same boat as you.

i feel i am in more pain now than before my lap. I thought i would have at least a couple of months of relief.

Most of my pain is in my right side. I know have stronger pain in my right side my right leg and groin. Also now in my left shoulder. I am constantly exhausted and everyday is a struggle.

I was left after my lap with no support! Had to ask the nurse what had been found and treated as i wasnt told anything. i Have endo stage 2.

I have been in and out of hospital for the past 3-4 years and its also where i work. (i am not clinical staff ) They do not know what to do with me give me pain relief for a few days keep in then send me home thats it.

I have also had alot of time off work like yourself, im in a physical job. i am actually going back to work for the first time tomorrow and i know im not ready but im afraid of losing my job. which i cannot afford to do. I have also tried to change my working hours however my work are not very supportive!

I am alot of painkillers i have to have tramadol before i go to bed. I am not sleeping due to the pain and keep having hot sweats.

I am currently changing my diet to the endometriosis diet to see if that helps. As i always have loose stools.

I have gone back to my GP to inform them of my pains she has phoned my surgeon about 2 weeks ago and i still havent heard anything back. I am now going back to the GP after work tomorrow and im not leaving until something gets sorted!

My only advice is to keep pushing its taken me 7 years to get this far! I'm not waiting another 7!

i am only 28 and feel like I'm much older. The exhaustion really gets me down!

so you are not on your own. x

[Robyn17 in reply to steph_D]

Hey,

It's so disheartening, one min you think things are going in the right direction then bam back to square one. Surely there has got to be more that can be done. There are soo many women with this condition and going out of their minds because of many things. One of the main ones is not being understood or taken seriously. It's soo frustrating. Xx

[Hidden]

I had no pain at all before my lap. I had no idea I had endo, but I was infertile and had an exploratory lap done to try and figure out why I was infertile. They found a LOT of endo and it was removed during that same lap.

Now, 4 months on, I get a lot of pain, especially around ovulation. My periods are now awful, I bleed for 7 days (pre op I would bleed 3 days). I’m worried that I’ve opened up a can of worms by having the surgery done. Almost like my endo was laying dormant until it was messed with during surgery. However, I know removing the adhesions etc are what is best. I’m just going to try and do what I personally can to help ease my symptoms (diet etc) and hope like hell that it doesn’t get worse.

[Robyn17 in reply to Hidden]

I know how you feel. You are advised that once you have had this surgery it is less likely to come back but yet you have this unbearable pain, no amount out heat or medication is working and you end up questioning yourself and the consultant because of what they have advised you!!!

I hope things get better for xx

[Tallbarbara05]

Hi. Did your consultant mention adenomyosis to you? I had a lap in December to remove stage 4 die endo and my gynae noticed I had a bulky uterus which is a sign of adenomyosis. I also had pain after my lap which started to get worse. Back pain, leg pain etc. X

[Robyn17 in reply to Tallbarbara05]

Hey, no he didn't, if I'm honest I haven't really had many answers to any if my questions to him all I got was, once he has done it that's it he doesn't go back in! I am going to get a second a opinion as like you my pain seems worse than before to the point where I loose the use of my legs as it gets so painful! I'll ask the question of adenomyosis, thank you xxx

[Tallbarbara05 in reply to Robyn17]

I’d never heard of it until my consultant mentioned it. Google the symptoms and see what you think. Pain can be very similar to die. I had a hysterectomy 6 weeks ago and feel great. Not for everyone but I’m 46 so it was a no brainer for me. Good luck xx

[isabel-21]

Hello to all the ladies that had a lap surgery....... I am so sorry to hear these sad stories, really......it is scary as I am looking for it for my daughter too. Is it possible to inform me what kind of surgery you had, because here in Greece, 2 doctors talked about cauterization and I read that there are different ways for surgery endometriosis. (Robyn17, Tallbarbara05,JugheadJane,Steph-D)

[Robyn17 in reply to isabel-21]

Hey,

I had my cut away as I was advised that this was the better option than using lazer treatment to remove the endo. I am still doing my research into everything at the min xx

[isabel-21 in reply to Robyn17]

Thank you Robyn17...........yes this is what most of doctors tell........I wish you all the best........pain is a terrible situation..... xxx........

[vixstar84]

Hey. Did you have excision or ablation to treat your endo? I was diagnosed in March and have had 3 laps to remove Stage IV and then adhesions which was successful. Similarly to a few of you I'm in as much pain now if not worse - legs, hips, pelvis, groin, back, headaches and Surgeon has said suspected Adenomyosis so trying make decisions on next steps. Keep pushing if not right. I thought my endo had grown back but Surgeon proved it hadn't and was successfully removed xx

[Mcfw]

I had a complete hysterectomy and BSO for a bulky uterus and cysts. They found severe endometriosis rectovaginal nodules and thethering from bowel to rectum. Supposedly dealt with by a general gynae (since discovered not protocol). I am now in more pain than ever before (right hand side under ribs down to waist), tender in groin and bowel movements from an hour before to during loo I am in so much pain that I am close to fainting. Borderline going to a&e every day, the only reason I don’t is I have to get 2 children to school and pick up again. I am not sure what I would do at this stage if I didn’t have my children.

[Maha1989]

I had two laproscoies and one hysteroscopy. My last was in July and I had two great no pain periods afterwords. The third one was one of the most painful ever! I am clueless. Didn’t understand what happened and why and asked many doctors and no one has a clear explainations. I have nothing to say but May God bless you my dear. I am in the same boat as you and hopefully one day we will be over this pain.