Had the injections ... I think it back with a vengeance :(

I had 6 months of gonopeptyl injections plus an operation I. 2012. I had appendicitis last December and had that removed. Then in January was told I'm not allowed anymore injections as your only allowed 6 months (even though it was working). 2 weeks after the pain came back. Now I'm floored by the pain it is even worse than before. My gp says it could be scar tissue but I don't believe so the pain is like before but constant and have bled for a month. My consultant has said I have to think about what I want as I am running out of options :(

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  • Hi Kez123, I have had a similar thing happen to me, i've had endo in the past and had this excised early 2013, however the following month the pain and other symptoms were awful. I eventually had a lap on September last year and this time they diagnosed Adenomyosis. I was put on 3 months of injections (Zoldex) and they were the best 3 months i've had for years! The idea was that if the injections worked then I would have a hysterectomy. My date was booked to coincide with when my last injection would've worn off, however they've cancelled the operation x 3 times and now my symptoms are worse than ever. It seems that the injections put everything on hold and now my body has gone into overdrive to catch up. The pain is worse in my abdomen, down my legs, sacrum area and I feel as if a baby's head is trying to come out! I have another date for 15th March and am just willing this to go ahead. I hope you get some relief and some answers soon. Thought i'd share this so you know you're not alone. Good luck with everything x

  • I am in quite a similar situation,having had all the medical treatment options that can be given and also at 48yrs not allowed anymore GNRH drugs.You can have more than 6months of GNRH agonists as long as you agree to add back HRT.I had 2 years of decapeptyl and 1 year of synarel,but had to have hrt which I always think is a no brainer.I had absolutely no pain for the 6 months without HRT,but on the patches had pain and mood changes,then got a suspected pulmonary embolism,so was immediately taken off both the decapeptyl and the HRT.

    None of the drugs are cure,only supress periods and allow it to shrink back,but as soon as you come off them the body and brain goes into overdrive and causes massive hormonal surge in oestrogen and we are back in agony.

    It very much depends on your age,whether you hope for children or have completed your family.Many here have said mirena coil is very effective,others say proper excision by endo specialist surgeon is only way forward.I am being told to have total hysterectomy and excision,but am unconvinced re the hysterectomy.Take your time and don't be forced into a decision you may later regret eg hysterectomy.Others however never look back,so ithas to be a personal choice.

    It is so very difficult ,but do your research and become informed about your choices.There are lots great websites that have been posted here -some traditional and others looking at holistic approaches.

    I am seeing a herbalist ,nutritionist and follow the endo diet.This is not enough in itself,but I hope is making my body stronger by working on immune system,liver,digestion etc

    know you are not alone and sending you a big hug.

  • Thank you for replying I have been in so much pain again today. Rung my consultant but the earliest I can be seen is April. I am going to ask for a hysterectomy. I'm 30 and a single mum of a gorgeous little boy so I have been blessed. It's affecting my life so much. The pain floors me and my little boy now comes and lays with me and rubs my back. I have had the coil it didn't work for me then discarded itself after 10 months lol. I have been told by four consultants I need a hysterectomy and am starting to get my head around it.

    I really hope you get your operation. Will you let me no? X

  • So sorry to hear you in such pain.My kids are 17 and 20 but I remember how hard it was to be in such pain with lively little ones.It is lovely that your son will lie with you.I used to have them snuggle down and we read lots and lots of books.Think my son can thank endo for his love of reading!

    Have you tried any drug treatments?Will you have support if you have hysterectomy? Have you been offered excision of endo? I am going to ask for more excision(have had 3 laps) and if that doesn't work only them will I opt for hysterectomy.As I am 48yrs gynae seemsto think this best option,but I really worry about complications as I am already pretty disabled due to Meningitis.

    Have a look at the hysterectomyassociation website -lots of great info there,if you decide to go this way.

  • Hiya, I have already had an excision. I will have support from family if I choose to have a hysterectomy..my mum had one when she was my age and my sister has problems too. I have had all sorts of drugs, coils etc but my consultant says these things are just prolonging the hysterectomy. Have they told you there would or could be complications for you? Xx

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