Green and confused

[Anastasia17]

Hi. I'm 52. I had a laparascopy and hysterscopy for another condition in September 2018, the 2 months 'urgent appointment happened 4 months later when I was given the diagnosis. In these 4 months I went through a lot of pain, suicidal thoughts 1st thing in the morning, depression. The depression carried on until April, I am getting better.

No support. No help.

The GP told me on 7 February that as I was getting close to the menopause, there was nothing to do.

The newly middle aged recruited nurse told me mid-March that for :

- the endo: nothing could be done

- repetitive cystitis: nothing could be done

- menopause: not much can be done.

This is called medical care. By so called qualified GPs and nurse.

Please could someone give me the meaning/ definition of the expression'medical care '?

Since the laparoscopy, I seem to be in more pain than before. Before, it followed the cycle. Now I have a constant pain on the left side and also on the scar section of C-section, I never felt these 2 pains before. Has anyone had the same experience?

I have been told it could be damaged nerve during surgery. Would anyone have any experience of this?

Also, I haven't been told the degree of the endo. Where it is placed and what organs are affected? Effectively, I was not expecting this diagnosis, I was completely clueless about this invisible disease that the so-called qualified GPs keep diagnosing as IBS (is it more costs effective for them?). I was not given any explanation about this condition, no one to talk to, Dr Internet that I didn't feel related to me apart from scaring me.Re-depression.

I was meant to help my son with revising for his GCSEs. I have barely helped him. It's awful.

The zero support in the UK is beyond awful.

Suicide has appeared as an option as good as the zero support, zero talk, zero medical knowledge, extra loneliness, extra embarrassment.

Its the same for the pre/perimenopause.

It's the same with anxiety levels rocketing sky high.

It's the same with depression.

Its the same with the malformation I was born with.

No external help. No support.

No nothing .

My husband has been my rock. For months. It is scary for him as well.

Despite the suicidal thoughts, despite the level of pain I was in, despite the anxiety, despite the depression, I went back to work 2 weeks after surgery.

Being with people, sticking to a routine, trying to be there for my family, having my husband and children around, putting on a brave face despite the pain, putting one foot in front of the other is what is getting me out of depression and also Rhodiola, magnesium, anti stress drops, and other supplements that I research, I buy.

I cope on my own.

Medical help, medical support inexistent.

I keep smiling, walking, going to work, taking care of my family.

After all this, I may simply de-register from the GPs, they've ignored all my symptoms for the past 7 years, apart from giving antibiotics that were not needed. They were practically laughing at me, all these years, stupid woman!

I have coped on my own . I will never forget this.

Since the laparoscopy, I seem to be in more pain than before. Before, it followed the cycle. Now I have a constant pain on the left side and also on the scar section of C-section, I never felt these 2 pains before. Has anyone had the same experience?

Thank you for your help.

[Abbbb]

Hi Anastasia17

You're post is heart breaking. I'm so sorry to hear how hard things have been for you.

The lack of care or professionalism you have faced is nothing short of disgraceful. And unforgivable.

I only have my experience to pull from, and my NHS experience is less than perfect. But please please get a second opinion.

To say at 52 there is nothing to do for endo is shocking. I could be wrong but it may be they are waiting for the menopause to kick in which reduces your estrogen levels which is what the endo feeds off. However based on the amount of pain you are in, theres plenty of other treatments they could try, not only a laparoscopy to treat what there, but zoladex injections, danazole tablets, I mean there are things out there.

I dont know your trust but you have every right to see a consultant of your choice. I'd be searching the web for anyone within a reasonable distance on the NHS and request a referral to that person.

I was lucky enough that a a family we could re route funds to go private, I will always be slightly bitter that we are financially so far behind where we should be but with my health now I dont regret it.

Do you have a lot of information on endometreosis, such as controlling flare ups through diet, excerise, inflammation vs pain killers and other treatment options of endometrosis? I'd be printing all the treatment options and putting them to my gp asking which one if these they intend to start you on.

I truly wish you all the best, I remember the chronic pain so well and I didnt have it for nearly as long as you have been dealing with it. You are a very strong woman to have got this far. Dont give up. Cry louder. Demand the treatment you deserve. You shouldn't have to, it is so wrong but please dont give up.

Good luck xxx

[kittykins7]

Hi Anastasia,

Reading your post my heart goes out to you. I totally understand how low this can make you feel. Being stage 4 myself and having a laparoscopy, and then the gut renching feelings when it comes back again, and how awful the doctors are etc, the isolation, awful thoughts....I understand. The best thing I ever did was read a book called ‘ heal endometriosis naturally without painkillers, drugs, or surgery ‘ by Wendy K Laidlaw. I got it on amazon, it’s been an absolute life saver ....you have to be totally dedicated and do a lot of what’s in it.....but I am astounded at the results.....I hope you read this and give it a go.... and let me know how it is for you . Xxx

[Anastasia17 in reply to kittykins7]

Thank you. I am changing my diet to gluten free, lots of green beans, fruits, dairies out of the window... ... looking at endo pilates exercises on line.., walking.. I am coping . I will look at the book you recommended. Thank you again for your support.

[StefaniaJW]

No matter if you had a hysterectomy, unless you had an experienced endo surgeon performing AN EXCISION LAPAROSCOPY on you, endo will still be there and worse, might have grown on the scars from the previous surgery. You need to seek an experienced endo surgeon to perform an excision laparoscopy on you. I'm sorry but there is no other choice. Please get referred to a BGSE centre or better contact a Nancy Nook doctor (go to the Nancy Nook group on FB and search for a doc in your area in the "Surgeons International" file you find under "Files"). Best of luck!

[morvena]

Please don't give up the advice of the others is right. I am 55 and have stage 4 endo and fibroid. For the last 2 years my gyno has tried various treatments whilst I am still going through the menopause so there are options out there. 4 weeks ago my laporoscopy to remove fibroid and have hysterectomy could not be completed and they are now referring me to my nearest specialist centre to have the surgery I need. You can do this too so insist on the referral. You should not have to suffer. I hope things improve for you, keep pushing you will get there.