Now 20 stone in weight (127kilo) and still no pain relief.

Women's health
1

Hi,

I'm writing on behalf of my 21yr old granddaughter who is in too much pain to write so I said I would go on here for her.

She started her periods at 11yrs of age and had been suffering with pain since she was 10yrs old. Through her teenage years she had a lot of time off school. One of the teachers reckoned it was just bad period pain. I told her she was no Dr so had would she know it was just that. 

My granddaughter eventually had tests, laprioscopy, blood tests, internals and removal of cysts on her ovaries. When it came to her having a scan they said she had Endometriosis. So off she went to the hospital for the operation to have it removed. The Dr told her she couldn't remove all of it as it had spread to her muscles.

She's been given one lot of medication after another and seen one consultant after another. One consultant was a specialist in Endometriosis.

Now they've moved she has been referred to see a specialist in June. She said her pain is so bad at times she just can't move. She's even gone all day with nothing to eat and exercising is out of the question. Hence the increase in weight.

I think I've got all the above right but Im sure when I tell my granddaughter she'll soon correct me if I'm wrong lol.

Has anyone else on here suffered for ten years, or more, and still not had any, or much, pain relief? 

What about operations?

Have you contemplated on having a Hysterectomy in the hope of being pain free?

This is the stage my granddaughter is at, as she is so fed up of not getting anywhere.

Do any of you have any success stories?

Thank you.

Best Regards

Gloriana

 

2

Hi,

Yes I have considered having a hysterectomy.  I'm 19, so not to dissimilar age, and started menstreuating when I was 10 years of age, similar story minus the cysts, and failed A-levels once already (hoping not to now). I had a mirena put in after the laproscopy- the idea being that I would have regular lighter periods.  Well that has caused some problems of its own but onwards to the success!

I'll class myself as a short term success story for now.  I have recently been put on GnRH analogues, its an injection taken in the buttocks once a month and can only be taken for a maximum of 6 months.  I had it explained to me by a specalist that by bringing on the menopause you are stopping the cycle therefore the endo growth that was there (and a particular type of ovarian cyst) 'dies' as a result of the lack of cycle hormones.  This means the bits that are missed during surgery die and more importantly there is no growth.  I'm half way through and I'm fantastic, and dropped some weight (although not as much as I would like, yet).  

I would also recommend some IBS over the counter tablets or some form of laxitive as it seems to help with the pain (but I run on being 'naturally' constipated anyway so not professional advice).  

Any questions please please do get in touch. 

Not sure where im going at the end of the treatment but im feeling more positive than ever.

Wish all the best

Claws2501

3

Hi Claudia,

Thank you for your response. It's amazing how different consultants tell you different things. My granddaughter has already been told there's nothing else they can do. She can't keep having operations as there has to be a gap because of the anaesethic or something. As she's going to see a new consultant fingers crossed he/she will be able to give my Granddaughter more options etc.

I found your story interesting and I know everyone is different. I've read a few stories on here already and my granddaughter wasn't even given any of the options others have said either. It's amazing and just goes to show half of these consultants are quite evidently not knowledgeable enough in this area. One patient says their Dr said after a hysterectomy the endometriosis doesn't come back and another says it does. Even the consultant who is a specialist in Endometriosis didn't give any other options for my granddaughter.

Thanks for the advice Claudia this has been really helpful and I will pass this on to my granddaughter to make notes and then if her Dr doesn't suggest it she can. Her appointment isnt until next month so as soon as I know anything I will let you know how she got on.

Im really pleased your treatment is working ok for you and I will keep my fingers crossed for your success. Good luck with your A levels.

Take care.

All the best.

Gloriana

4

Hi Gloriana, 

Not sure which country you are in, I'm UK so have the wonders of NHS.  If you are NHS too, then check if you have any private hospitals in your area, many now take on NHS patients, and give you a private specialist to see.  That is how I got my current treatment.  

Also, breaking down crying (if your granddaughter hasn't already done so) in front of the doctors helps too! only way I got them to take me seriously was by demanding a hysterectomy (while in hysterics to my mother) in the doctors waiting room.  It jars their sympathy for some reason!

Regards

Claudia

5

Hi Claudia

Im in UK. I didn't know private hospitals take on NHS patients. I will certainly pass this information onto my granddaughter  to check out. Thank you Claudia.

It comes to something when you have to kick up a stink though to get Drs attention these days, but if it works all the better. Good for you, for getting results.

All the best.

Gloriana 

6

Hi

You don`t say if she is on any hormonal treatment now.

Hormonal treatment does (in most cases) decrease or remove the pain from the cramping and inflammation that comes with Endometriosis.

There are many different pains that comes with Endo, depending on where the disease grows. Crampingpain, inflammationpain, nervepain, adhesionpain, bowelproblems, intestinal cramping. Knowing what type of pain makes a difference in treating it. 

I had stage 4 Endometriosis, multiple cysts, spread to intestines. Unusually advanced disease. I`m painfree today, that is from Endometriosis pain. I had surgery to remove some of the endo, resection of the bowel and to free up the organs that were fused together. They could not remove all the Endo on me either, but they removed everything from my intestine.

I was in severe pain, before my surgery and treatment, I could not eat, I could not function. 

I have also been on GnRH analogues(Lupron) Endometriosis still grew back. The sideeffects were for me very harsh(I was on it a long time, longer than advised, and it got heavier with time.)

Now I live a functional pain free life on Provera, that is Progesterone. The Endometriosis is still growing back, but I don`t have cramping or inflammationpain, because the progesterone keeps it inactive. 

I often see that it is difficult for many to accept that they have a chronic disease, and often they change or refuse to use different hormonal treatments because of their sideeffects. Understanding the disease, that it is progressive and coming to terms with it, can be a challenge, it was for me. I kept thinking I would be cured instead of accepting that it was for life and I had to accept managing it with medical treatment and surgeries. 

Hysterectomies don`t always cure a patient from Endo, especially when it has spread to other organs. I have evaluated it myself, but now I don`t have a need for it. 

Best wishes for your granddaughter

 

7

Hi Moon,

Thank you for your reply. 

Wow you have been through a lot.

My granddaughter wasn't aware there were different stages of Endometriosis so she doesn't know. As she has an appointment at the hospital next month she could ask then.

She was put on the pill but her BMI got too high so they took her off it.

Hopefully her next consultation will prove better for her. So we'll just have to wait and see. It will be interesting to see if he/she can offer my granddaughter better treatment as she hasn't had much luck So far.

I will come back on here next month hopefully with some results. 

Kind regards

Gloriana

 

8

Hi Claudia,

Ive asked my granddaughter about private hospitals and she said she is already with one as her stepdad has private medical care at his work. So she's lucky there. Let's just hope when she sees her consultant next month that she will get some results.

I will come back on here next month with an update.

Kind regards

Gloriana