Synarel the alternative to Lupron/prostap - my opinion

[Endo_Jaded]

So, I refused Lupron/Prostap after doing my own research and having access to legal articles and extra information.

Personally, for me it was unsafe and increases too many risks for me. However, this was pushed and pushed on me and I was always left feeling as if they felt I wasn’t willing to help myself. I had endometriosis symptoms from beginning my periods at 8 years old, but I was placed on the pill at 11 (1997) and this masked the symptoms for a very long time, I fell pregnant at 16 on medical advice due to decreasing fertility (endometriosis still not diagnosed at this point) by 18 I had both my children and that was me done. I was back on the pill at 18 and stayed on this until 2015 at 28 coming of this was eye opening. I always had pain every month around ovulation and period increasing in pain alternating months. Coming off the pill increase this pain from 2-4 level right up to 8-9 this led to me presenting at A & E numerous times and the discovery of my 7cm endometrioma in 2017 and the beginning of my journey finally.

Once this was found I was told to go back on the pill to hide the pain and stop the Endo (lies) until surgery. I waited in pain on the pill with a 7cm endometrioma (chocolate cyst) from 2017- Nov 2019 when my first lap was conducted. During this lap the surgeon couldn’t do anything as he was incompetent and failed to prepare or assess the field prior! I was closed up after freeing of adhesions only and told I had to urgently have an MRI and be further referred to a specialist. Jan 2020 I had an MRI and everything was fused again 30 days later, even the endometrioma had begun to grow back. ( This ruptured prior)

So, here we are Feb 2021 still no surgery since 2015 pain presentation on full.. so 7 years!

I was yet again offered Lupron/Prostap and told this was my only option. I had read about Synarel and asked about this prior and was told the UK didn’t have this. But a friend had been given it for IVF ask I pushed via letter demanding I be allowed to help myself and avoid extra risks and this worked, I began Synarel Jan 2021 and get to use it for 6 month initially.

Synarel, if you are unaware is a nasal spray to stop ovary function and place you in chemical menopause. It functions differently due the availability in spray format. You take a spray in one nostril in the morning and another spray in alternating nostril in the evening, every day but if it doesn’t agree with you, you can simply stop taking it and resume normal ovary function usually. You take it with HRT mine is Tibolone.

Lupron/Prostap comes in injection of one month or three months and if effects are bad you can’t just stop and have to wait for it to leave your system. Many I have spoke to have after effects that impact them, some recommended it for relief, and others have had horrible experiences.

Synarel for me has been a blessing. I feel happier in my mood (haven’t had mood swings or anything), temperature is a bit crazy to be fair, skins been dryer than usual but hair seems fine. I think I’ve lost breast mass slightly, and I’ve lost 6kg but that could be a little from feeling happier and the assistance of buprenorphine pain patch, accompanied with the reduction in symptoms from Synarel.

Prior to Synarel and buprenorphine 10mg patch I was in daily pain 7-9 rarely lower.. bed bound June and July of 2020. I was suffering from cyclic vomiting and diarrhea pre ovulation for three days, and pre period for a similar time, nausea with pain was a regular occurrence as was hormonal headaches. Leg pain limited me for three years and gained me 60lbs.

I still suffer but to a lesser degree, the dizziness associated with nausea is reduced by half, the cyclic vomiting and diarrhea occurs only occasionally and leg pain is reduced. I have had a few headaches, episodes of dizziness and still felt some debilitating pain but compared to before it’s been a drastic improvement in only 5 weeks.

I wanted to share my opinion and the impact on me for others to have a positive review of the option. Also, to highlight Synarel as a viable option for women too. Of course I am taking HRT Tibolone every day also so that helps too.

I am awaiting a total hysterectomy and have been since Nov 2019 and hopefully this will be soon. Sadly, this is the only option for me. Primarily, this is due to the lack of Excision surgery in Northern Ireland and lack of solid surgeons but also due to the severity of my Endo and the impact to other organs and surrounding areas. Especially bowel involvement and risk present.

Thus, using Synarel or any chemical menopause was an easier option for me as it’s highly unlikely I’d have any fertility left and therefore there wasn’t any risk to future fertility. However, if you are TTC or intend too I highly recommend Synarel over any others for ease to system and expulsion from the body with lack of after effects.

I will come back and do another update to keep an informed thread on this topic.

Any questions feel free to ask

[csytasista]

Hi. Thank you for your post and the information. I see a lot of my own experience in your story. I was offered prostap last summer and decided not to take it - it seemed like a risky option and didn't suit me at the time (just started a new job then I had a lot to deal with after my partner suffered a head injury, I just couldn't take the risk of taking something that could mess me up while I was dealing with all that). Probably due to stress my symptoms have gone from just about manageable albeit miserable at times (after being bed bound for some of 2019 I feel I've come a long way), to much worse again. I'm now thinking I really need to do something even if it's just to get me through some of this year and so I can get back to a healthier and more stable place again... it's such a rollercoaster and feeling so unwell at times means that things build up so when I'm not in pain/nauseous/fatigued etc I am chasing my tail and getting stressed with catching up on life, worrying about my performance at work and all the other pressures of life!Anyway, I have a gynae appointment in a month, I think it's meant to be a follow up from trying prostap. I'm super interested in synarel after your description and I wonder if I can push this with the gynae as an alternative to trying prostap. So thank you and I will do some more reading, would be happy to hear if you have any further advice / information.

Thanks again for sharing

[Peenie123 in reply to csytasista]

I had synarel approx 20 years ago for 6 months to stop my periods and apart from headaches it gave me a 6 month relief! X

[Endo_Jaded in reply to Peenie123]

I’ve had one or two headaches but as I’m on the buprenorphine patch it’s hard to tell the culprit 😂. But Synarel in a month has done more for me than anything else has.. even though I still feel the adhesions and fibroid pain, which is expected. Do not understand why this isn’t the go to first drug for chemical menopause really! Must be a cost thing.

[Endo_Jaded in reply to csytasista]

If you drop me a DM I can add you to the Endo (signal app group I’m building) it’s just a bunch of Endo girls yattering about Endo, life and whatever tickles your fancy ☺️ Love health unlocked, but building this group as a personal element. Entirely a free choice.

Definitely give Synarel a go if you want to try chemical menopause without committing to a drug that you can’t break free from if it doesn’t work.

I’m only beginning to advocate for myself but it’s good if you have someone advocating for you, or if you feel heard enough. My lot don’t hear me unless I complain via letter and then they sit up.

I was told this week that they have no date or even a projected date for my hysterectomy because surgery isn’t allowed to happen in NI, she was working on behalf of my doctor and even said I’d get no more scans or mri’s because he’s going in believing it’s the worst it can be as per my last scans.

Ask me anything and I’ll try and help or try and find someone who can. Or like I said you are more than welcome to join our personal group chat on (signal app) can explain in DM better. And that’s a group of girls building who all suffer similar becoming friends, talking about anything and everything even the TMI a stuff xx

Anyone with Endo/PCOS/adenymois and such can come and join, just drop me a DM xx