Decapeptyl and HRT

Hello, I have just joined this forum today even though I am 39 and was diagnosed with endo in 2011. I didn't even know you were all here! I have had laparascopic surgery twice and a baby since my diagnosis. I had my first gynae appointment in 2 years today and it seems the way forward for me will be a hysterectomy within a year (I am fine with this, one is enough for me!) but to check if this is the right procedure the Dr wants me to start on the injection for false menopause with low dose HRT to help with the side effects. There is a lot of scary info out there and its hard to know what to believe. I wondered if anyone on here has first hand experience of these drugs and would mind telling me about it?

[clairey9888]

Hi I'm also new to this forum and was recently diagnosed with endometriosis as well. I have been given the Depo Provera progesterone injection and my doctor is also discussing with me the option of an induced state of menopause. She is having me see an endocrine reproductive specialist first though and they will make the determination...I don't know if that's a specialist you would considering seeing as well. As far as the Depo shots which I get every three months, I have not had any side effects from it. I was scared when I heard about the "induced menopause" but was reassured that it could actually be better for me in the long run. Hope this helps a little!

[Starry]

Hi and welcome x.

I am 42 and have deep RV endo nodule. I suffer with extreme fatigue, painful intercourse, and some bladder and bowel issues. My periods were short increasingly Niagara falls like and on day 1 very painful.

After 5 months on the Mirena I gave up because it was causing pelvic pain but it did stop my periods so had helped. I had the option of either a GnRH trial to see if Oopherectomy was an option or bowel excision. I agreed to the zoladex trial with ht tibilone.

Unfortunately I had lots of very severe side effects in particular extreme pressure headache, pins and needles, joint pain, dizziness, nausea, cognitive issues including concentration, brain fog, memory, difficulty structuring sentences, the shakes, hot flushes, low mood, vanished libido,and no improvement in fatigue.

It was vile but I persisted with a second as surgeon said it might help shrink the nodule. I doubled the hrt dose and that reduced the cognitive problems somewhat so I could at least function.

It was so unpleasant that I bailed on the third implant. It is truly evil stuff. I was not told of the potential long term effects and risks of menopause becoming permanent though I was warned of the bone density issue and insisted on a scan.

I have now opted for the bowel excision surgery on the basis that oophorectomy or hysterectomy has substantial long term risks anyway of dementia, cancer, heart attack so I'd rather face the immediate higher risk surgery now instead.

8 weeks on I have bled but am suffering extreme knee and elbow joint pain and dizziness and balance issues that my surgeon believes is "probably" still the GnRH zoladex. I've now been signed off work with extreme fatigue and the endocrine disruption from the zoladex.

I wish I had never heard of GnRHs and Zoladex. It has made me much worse than I was before.

But I hear others do benefit, and I did not have severe daily endo pain. All I can say is read the P.I.L very carefully as it is extremely powerful stuff.

endometriosis.org/treatment...

medicines.org.uk/EMC/medici...

[Judit999 in reply to Starry]

Hi Starry, I'm very sorry about your bad experiences about GNRH. I hope now you feel much better. Do you mind me asking if the GNRH injections did shrink your endo at least or not?

Thanks a lot.

Take care,

Judit

[Starry in reply to Judit999]

Hi, I only took it 2 months rather than 3. In my surgery my nodule was much bigger than the pre zoladex mri indicated so at best it did nothing.

I read afterwards that mature rv endo nodules can bio synthesize their own oestrogen and be immune to hormone treatment and I believe mine was such a case.

[Judit999 in reply to Starry]

Thanks Starry. I hope you are okay now!!

[Starry in reply to Judit999]

Thank xx Not really but I'm working on it.

[Hidden]

I've had a course of decapeptyl, a course of prostap and a hysterectomy/oophorectomy.

The first month on the drugs is rough as you get a hormone surge, so expect things to get worse before they get better. Neither of the drugs were particularly effective for me - I took HRT with the decapeptyl and still had periods. It was abandoned after 5 months due to pain. I had the prostap without HRT and my bleeding did stop but I still had pain. Side effects wise - initially I had joint pain and headaches but this went within a few weeks. Other than that hot flushes were the most noticeable side effect.

I know a lot of doctors seem to say have gnrh analogues, if that works then have a hysterectomy but in my experience it's not quite as simple as that. A hysterectomy is also about far more than just fertility and really should only be considered as an absolute last resort (and only if you have adenomyosis). Have you had excision surgery and are you being seen at a bsge centre?

[Heloo85 in reply to Hidden]

Just a final note i want to add on to this great reply, a hysterectomy isnt a cure either! Other things can prpduce Estrogen including fat cells, pituatury gland (probably spelt wrong) and endometriosis itself. Im currently on a second course of Zoladex but to treat not to see if a hysterectomy would be suitable i dont think? If it is, it will be a firm no from me. Ovaries are important!

[Judit999 in reply to Heloo85]

Hi, I hope GNRH worked for you to shrink endo. Would you mind telling me what results did you have with it?

Thanks a lot!

[NoEndoInSight]

Hello CCicero, apologies in advance - this is going to be a bit of a long reply, but I hope it's a helpful one. I've just been replying to someone else about Decapeptyl and some of the advice is transferable so I've copied and pasted!

Decapeptyl is a "GnRH Analogue/Agonist". This class of drugs act on the hypothalamic–pituitary–gonadal axis (HPG axis) in the brain to suppress your body's production of oestrogen / progesterone and thereby your monthly cycle. This can bring relief from cyclic Endometriosis symptoms, but (as with all medications) "GnRH Analogues/Agonists" have side effects and, for some women, those side effects can be severe; as well as a potential loss of bone density, these drugs are known to cause hot flushes, brain fog (memory problems/poor concentration/confusion), and significant mood changes (including depression and anxiety), fatigue, syncope (technical term for fainting), GI symptoms (nausea/bloating), and uro-gynaecological symptoms like abnormal bleeding and discharge.

Many of these adverse effects are caused by the hypoestrogenic (oestrogen-deficient) state "GnRH Analogues/Agonists" induce, which is why so many specialists prescribe them along with complementary dose of "add-back" HRT. The HRT is supposed to "add-back" enough oestrogen to ease some of Decapeptyl's more unpleasant side effects without reactivating the growth of Endometriosis.

There are a few reasons why people have such conflicting experiences of taking GnRH Analogues like Decapeptyl.

The first is that every women's body is unique and while some women may find Decapeptyl incredibly helpful in suppressing their Endometriosis symptoms, others may find that either they are not successful. Some women suffer debilitating side effects that have a significant negative impact upon their general health and quality, while others may not suffer so many or such severe side effects.

Similarly, some women may initially suffer significant side effects, but find that those side effects are effectively managed by the addition of low dose of "add-back" HRT. But again, every women's experience of "add-back" HRT is unique and it can take a bit of experimentation to find the right "add-back" HRT dose - some women need just a low dose of HRT, while others find that their body requires a higher dose of HRT "add-back".

And, ultimately, there are some women who either cannot tolerate GnRH Analogues like Decapeptyl at all with or without "add-back" HRT because their bodies simply cannot tolerate the drug. It is impossibly to predict what an individual's experiences on these kind of drugs might be.

I've had two courses of GnRH Analogues - the first experience was ok, the second was really not ok. The best advice I can give you based on my experiences is to really read up on the Special Product Characteristics of the drug which Decapeptyl's manufacturer publishes, which can be found online at a very useful website called "Medicines.Org":

medicines.org.uk/EMC/medici...

I would recommend that you print this out and take it with you to any appointments you may have with your Prescribing Specialist / GP / Nurse administering Decapeptyl to you so that you can have an informed discussion with them about this drug's potential side effects before you start treatment, and also (if you decide to undergo treatment) so that you can swiftly and effectively raise concerns about any side effects you may suffer.

I would also recommend that you print out a copy and give it to key family members or friends, and possibly your employer for the same reasons.

GnRH Analogues like Decapeptyl are incredibly powerful neuroactive drugs. For some women they can be very effective at suppressing Endometriosis symptoms and they can have quite severe and significant side effects and they need to be very carefully monitored and managed by the medical professionals who are prescribing and administering them.

If you read the experiences of women on GnRH Analogues like Decapeptyl then you will find that many women of the women who had good experiences of them were often well informed of these type of drugs' various side effects before they started treatment, closely monitored while undergoing treatment, and their Specialists and GPs acted swiftly, appropriately, and effectively if and when they developed any side effects.

Sadly, lots of women are being prescribed GnRH Analogues without being warned of the potential side effects beforehand, without being made subject to adequate side-effect monitoring or management protocols, and without being able to secure appropriate support in dealing with any side effects that they may suffer.

So reading up on Decapeptyl "Special Product Characteristics", being prepared to go to your Specialist and GP and say "I've developed this side effect, what can be done to manage this?", and also being prepared to say "Nope, I've had enough - these side effects are too much to handle" (if you ever feel you get to that point), is the best advice I can offer.

All the best, x X x

[Hidden]

Thank you everyone. I feel totally confused and terrified now! I have got 3 weeks before I start it so plenty of time for further research. xx

[Hidden]

P.S. I don't even know what a bsge clinic is so I take I am not going to one! xx

[Hidden in reply to Hidden]

The list of centres is here: bsge.org.uk/centre/

They are mostly NHS and are all specialist endometriosis centres offering more specialised surgery than you will get with a general gynae. If you've been told you have stage 3/4/severe disease, bowel involvement, rectovaginal endo, or deep infiltrating disease you should be seen at a centre. Your GP can refer you. TBH even if you haven't been told any of the above I personally would want to be reviewed at a centre before agreeing to a hysterectomy. It's offered to us as something straightforward and routine but it's life changing surgery and should be an absolute last resort.

[Hidden in reply to Hidden]

Thank you for this information, there is one near me so I will look into it. I wonder why the gynaecologist has never mentioned it in the past 6 years! xx

[Red_Crumb]

Hi, I am currently on a course of decapeptyl injections. All I can say if for me it is amazing I feel like I have my life back. I am 28 and have endo and adenomyosis. All of my symptoms have gone. No pain, no fatigue, no pain during or after sex, no bleeding etc. I originally only had a presription for a 3 month course of 1injection a month. The first month was a little bit rough but since them I feel great. I am not taking any HRT. Hot flushes are a bit of a pain but that is my only side effect. I'd take hot flushes over pain anyday. I have now been prescribed another 3 months worth with I am over the moon about, had the first one this morning.

This is just my experience everyone is different and reacts differently. But after my experience with it I am dreading not having it once this course is over. I'm dreading going back to "normal".

[Judit999 in reply to Red_Crumb]

Hi Red Crumb, glad to hear the drug is so effective for you! could you tell me pls if your symptoms returned after finishing the injections? Thanks a lot!

Take care,

Judit

[Red_Crumb in reply to Judit999]

Hi Judit,

My period returned 3 months after my last injection. I went straight back to taking my pill (cerrazette) 1 month after stopping the decepeptyl. My symptoms have returned to a certain degree but are not as bad as they was before hand. But I am still having 2 week periods which is frustrating.

Are you having decepeptyl injections?

[Judit999 in reply to Red_Crumb]

Hi, thanks a lot for your replay! I'm glad to hear you still feel better. I'm suggested to have the injection, but i'm very much afraid of it, mostly because the first month extra estrogen, maybe in some cases it would just make endo grow

[Red_Crumb in reply to Judit999]

I was afraid to. But for me it was the best decision I made. Just to be pain free for 6 months made it worth it. Everyone has different experiences with it so unfortunately it is a bit of stab in the dark for everyone. If I was offered it again I would say yes in a heartbeat. You can always deny having more if you don't get on with it. It did take a couple of injection for me to see the full benefits.

[Judit999 in reply to Red_Crumb]

Your case sounds encouraging. Do u think it actually shrinked your endo?

[Red_Crumb in reply to Judit999]

I have not heard of decepeptyl shrinking endo.

[Judit999 in reply to Red_Crumb]

It can like after at least 3 months, maybe that's why your symptoms didn't come back full force. don't you think that might be the case?

[Heatherd1986]

I just had my 2nd Injection 2 days ago and wish I didn't. 1st injection side effects I had were awful terrible pains in my head and neck, I suffer anxiety as it is but this was made 100 x worse. 2 days after my 2nd injection and no pain killers are helping the pain in my head I have no motivation and my mood is terribly low doesn't help that I have no one to support me through this as my family are just saying get over it and get on with it