Decapeptyl injections any success stories please

Hi Lovely ladies hope you are having a pain free day.

Diagnosed with endo December 2015 on uterus and bowel. Burnt off my uterus but left my bowel as could not get to it with the incisions made.

Put on temporary menopause with Tibolone HRT I am 44 with no children

Had my first injection 3/12/15 second 3/3/16 and due to have my third 1/6/16.

I am still in a lot of pain in my pelvis, back, ovaries, tops of legs, around my womb, pain up my bottom, but no bleeding. Suffering with my bowel either constipation or loose. Tummy is really swollen. Have hot flushes too sometimes. I also have a pain in my upper tummy under my breasts. Has anyone suffered with pain up there please.

Just wondered if the injection had worked for any of you on this site. Would you know the side effects with the injection, as this hasn't been explained to me.

I have an appointment with the endo specialist 13/7/16 to decide the next step of my treatment. Has the hysterectomy been a solution to any of you ladies please.

Don't quite know what to do next, to get some relief from this pain.

Would be really grateful for any advice you may have.

This site has been so helpful and supportive to me in the past and I feel very fortunate to have you all.

Have a lovely evening

Lots of love Janet x

12 Replies

oldestnewest
  • Hi Janet,

    I am on same treatment as yourself at the moment and I am 30 with no children. I found the injection doesn't make me pain free ( I have symptoms you describe) but it certainly reduced. I also grow ovarian cysts with ovulation which endometriosis then attached to and cysts get quite big and fuse to uterus and bladder etc. I have had 3 removed previously that had gotten quite big (13cm). Injection helps with ovulation and menstrual pain but I still have the pain you describe. The pain higher up could be trapped wind?

    I am scheduled for a hysterectomy on 8th June so cannot answer that part of your question yet.

    Stay strong x

  • Good Evening Meg hope you are having a pain free day lovely.

    Thank you so much for taking the time to reply to my post, your advice is very much appreciated.

    This endometriosis is still a little new to me and not too much was explained to me after my laparoscopy in December last year. I am having an internal scan in July to check my ovaries, uterus, cervix and tubes. I was told earlier last year I had a bulky uterus, not quite sure what is happening there. I also have endo growing on my bowel.

    I also see my endo specialist on the same day as my scan, so should know more then.

    Best of luck with your hysterectomy sweetie I really hope you recover quickly and that your pain will be all gone.

    Keep in touch and let me know how you are doing.

    Thanks again honey

    Enjoy the rest of your evening

    Lots of love xx

  • Hi, sorry you're still in pain The hot flushes will be due to the injection - it puts your body into a temporary menopause. If they are bad ask for some add back hormones su h as Livial I think it is called.

    medicines.org.uk/emcmobile/...

    This will get you more information on your decapeptyl The thing I would check is that they are giving you a course longer than 6 months this can affect bone density. I hope your appointment with the specialist gets you some help

    All the best

    PS sorry on my phone :-)

  • Good Evening Mierran hope you are not in too much pain tonight.

    Thank you so much for taking the time to reply to me, your advice is greatly appreciated.

    I have an internal scan booked for 13th July then I see my specialist endo consultant the same day, so should get more answers then.

    Thank you for the link, I am much more informed now. :)

    Have you had endo for long. It is all a bit new to me but I know now I have been suffering since I was 30 years old and even before that.

    Thanks again sweetie and have a lovely rest of your evening

    Lots of love xx

  • Hi Janet,

    I have stage IV Endo with recto-vaginal and ureter involvement, and extensive adenomyosis. I am currently receiving Prostap (GnRH-a) injections each month as a bio-chemical management alternative to surgery temporarily. The Prostap caused alot of pain in my spine and pelvis and in my bones, joints, muscles and tissues generaly throughout my body, for the first 2 months. i was also completely wiped out for almosty a week after the first injection, but the 2nd one was easier and the 3rd one easier again... & I've recenly had my 7th injection and I has get some aching & fatigue for about 24 hours afterwards and that's it. The Prostap has been amazing - it has stopped my periods, stopped all Endo and related pain and enabled me to be physically active again and re-engage with the gym. I am also taking add-back bio-identical Estradiol, Testosterone and Progesterone. I am in the process of completing a a full battery of tests investigations so that my fabulous Gynae surgeon (who is a national specialist in Endo surgery) can get a full pictire of the disease process in my body to be able to begin effectively planning surgery. The specialist Endometriosis team also has a General Surgeon and together they will be carrying out a hysterectomy with extensive additional excision surgery including a re-section of my small bowel and hopefully temporary illeostomy. My case is severe, apparently one of the most severe in the country, but i have an excellent team looking after me :-) Bit of a spanner in the works now... was having a final investigation called a hysteroscopy (rigid) but this was unable to be completed due to an unexpected and significant obstruction in my uterus. On Saturday I received an appointment date for an admission to hospital for a GA for next Thursday for further urgent investigations (laparoscopy, hysteroscopy and biopsies) to make sure no sinister pathology (i.e. Cancer). So, bit if an anxious time at the moment, especially as there's a maternal history of morbidity due to uterine cancer that had spread. The main thing I keep focusing on is the fact that I am not losing weight without trying to so I think, and hope, its unlikely that I do have cancer. I think my uterus is just so impacted with endometrial nodules and adhesions, and perhaps some fibroids too. Anyway, all will be revealed next week. I'm bloody dreading the anaesthetic and that whole experienced of forced helplessness and not being in control. I'll let you know how I'm doing next week. Please feel free to ask any questions. I have done masses amounts of reading around Endo, hormones, Auto-Immune Diseases etc (which is what Endo is). Love & Blessings to you x x

  • Good Evening Honey hope you are well and not in too much pain this Evening.

    Thank you so much for taking the time to reply to me your help and advice is greatly appreciated.

    Gosh you have so much going on in your body sweetie, I really feel for you because I know how my endo makes me feel, so I can fully sympathise with how severe your endo is.

    Before I was diagnosed with endo I was told after an ultra sound scan that I had a bulky uterus, don't know what that means.

    I was really worried about being put to sleep before my laparoscopy but the lovely ladies like you on here put my mind at rest and I was fine.

    You will be well looked after and cared for by the kind staff at the specialist centre.

    The surgeons are highly skilled and I'm sure they will make you feel much better.

    Please do not worry sweetie I will be thinking of you.

    Let me know how you get on.

    Take care and sleep well

    Good night God bless xx

  • Bless you darling. Thank you so much for your kind thoughts & words. Did you need anything particularly following the laparoscopy? Any specific analgesia, cushions / pillows / tummy band.. to support tummy when in bed at night? Very loose-fitting pants / trousers / top / PJ's? How long was your recovery time? Howhat long before you went back to work? I've told my manager between 1 & 3 weeks..

  • Hi Honey hope you are ok today

    I was told to shave around my bikini line before my operation because the dressings they use tend to stick to the hair around there.

    I wore loose dresses and night shirts instead of pyjamas as found it more comfortable around my tummy.

    I didn't wear tights just long over knee socks as it was winter.

    I slept with a soft pillow over my tummy to avoid my husband catching my wounds in bed.

    Because they put gas into your tummy you experience a pain between your shoulder blades. I was advised to take gripe water for this. Peppermint tea is also good and polo mints.

    When you are able to have baths I used a small cap of Dettol in my bath and didn't have any infection in my wounds. Doesn't smell very sexy but it does the job :)

    The hospital told me my stitches would dissolve but they didn't and because they became uncomfortable I had to have them removed the hospital did mine, but the nurse at your GP's surgery could do this.

    I was off work for 2 weeks as I will be honest with you I did feel quite poorly and tired. I was lucky because I was only back at work for 2 days then we broke up for Christmas, so we were off for a week.

    My advice sweetie is listen to your body it will let you know when it is time to go back to work.

    Even when you do return back to work you will need to take things easy because your body will still be healing inside and you will feel a little tired the first week back.

    What type of work do you do, if you work in an office don't go lifting boxes of paper or anything.

    If you have any further questions I will be more than happy to help you my lovely all I can.

    Take care and please do not worry the laparoscopy is over quickly and you will be back home before you know it.

    Enjoy your Evening and sleep well tonight

    God bless you babes

    Lots of love Janet xx

  • Hi Janet,

    thank you so much for your lovely warm messages & reassurance. you are an angel sent x x I've made a little list of some of the things you've mentioned :-) Did you have to stay in overnight? Were you catheterised? my admission time is 7am!

    Helen

  • Hello Helen lovely

    No I had to be in for 7:15 am and I was home by 3.00 pm. You can't be left alone the rest of your operation day and the day after.

    No was not catheterised as soon as I had had something to eat and passed water I was allowed to go home.

    When is it you are going in for your operation, is it tomorrow or next week.

    Just know I am with you if not in actual body but in thought.

    I feel very fortunate to have a lovely lady like you to help and advise me, so any information and tips I can give you makes me very happy to be able to help.

    Is anyone going with you to the hospital?

    Take care sweetheart and please let me know how you get on.

    You will be fine really and will be recovered before you know it :) you know where I am if you need anything.

    Lots of love

    Janet xx

  • Good Evening Helen my lovely,

    Hope you are ok today and not in too much pain.

    How did you get on at your appointment on Friday.

    Are you all ready for your operation.

    You know where I am if you need to chat or know anything. I am always here for you.

    Do you have someone to go with you next week.

    Don't worry babes you will be just fine, they will look after you.

    Where in the country do you live, I am from South Yorkshire.

    I will be thinking of you

    Take care and I will speak with you really soon.

    Enjoy the rest of your evening

    Lots of love

    Janet xx

  • Good Evening Helen my lovely,

    Hope you are ok today and not in too much pain.

    How did you get on at your appointment on Friday.

    Are you all ready for your operation.

    You know where I am if you need to chat or know anything. I am always here for you.

    Do you have someone to go with you next week.

    Don't worry babes you will be just fine, they will look after you.

    Where in the country do you live, I am from South Yorkshire.

    I will be thinking of you

    Take care and I will speak with you really soon.

    Enjoy the rest of your evening

    Lots of love

    Janet xx

You may also like...