Weight gain & treatments

Has anyone else gained weight on decapeptyl (triptorelin) injection or pregabalin or mirena coil?

I’ve ballooned from size 10 to size 14/16 since my last operation and gained about 3-4 stones!!

I’ve never ever had to worry about my weight and know that being inactive due to daily pain doesn’t help but I’ve been really careful to stick to 1300 calories a day but still gaining weight.

Currently on decapeptyl injections with hrt which probably hasn’t helped.

Also take pregabalin for nerve damage pain.

Has anyone else gained weight like this? And can anyone recommend anything to help?

[Roro1]

Hello Lily, I too would like to know how one lost the weight. I was placed on triptorelin for 6 months, had surgery beginning of Dec 19. I was a size 10/12 and now a size 16. The heaviest I have ever been. I struggled to go to the gym while on the injections due to the constant body pain. I started feeling better in May 2020, started exercising but take ibuprofen before I go for a jog to help with the pain. I’ve been told by the consultant that I cannot be refereed for IVF and need to lose weight, I cannot wait to get my body back. Sorry I don’t have the answer to weight loss.

[Hidden in reply to Roro1]

Aw I’m glad I’m not the only one!

It’s horrible isn't it? I’ve lost all my confidence and it’s so uncomfortable as most of the weight is around my middle and feels like it puts pressure on the most painful parts of abdomen.

What weight range/ BMI do you need to be for IVF? Well done you for managing to exercise!

It’s so cruel that it’s because of the condition you’ve put weight on and also need IVF and now you’ve got to struggle through the pain to be entitled to it.

Every time I get on the scales my heart sinks. I never imagined I’d get so big. I know there’s people much bigger but for me it’s a big increase in size xx

[Roro1]

I lost my confidence too, in a way I am glad I have to work from home as I was dreading the return to work and to have to buy new clothes as my current clothes do not fit and I cannot get myself to by a size 16. I feel like this is not me.

I have to bring my BMI to about 29, she basically said it will take me 6 months to loose the weight and I should see a dietician to get me there by then.

It’s horrible. Ive also tried yoga and Pilates, you could try that see if it helps. I couldn’t keep up as the sweats were irritating. I wasn’t put in any hrt. xx

[Lofty1589]

I’m on Decapeptyl and the weight just keeps piling on. It’s so upsetting because some days I’m too nauseous to eat anything and yet I am just gaining gaining gaining

[Hidden in reply to Lofty1589]

I’m the same, i feel like it must even if I ate nothing at all I’d still pile it on!

How are you finding decapeptyl? How long have you been on it? X

[Lofty1589 in reply to Hidden]

Honestly, I hate it. I’ve been on it since December. I was having monthly injections and then on 28th April, they gave me a 3 month injection so I wouldn’t have to go into the hospital during the pandemic, and it would carry my up until my appointment on 10th July. This was cancelled but I’m having a scan and kind of appointment with the consultant next week after doing some pushing. I can’t wait to be off it but I have so much anxiety when it comes to having my periods because they’re so painful.

The only good thing it has done for me has stopped me having periods. But I’m still bleeding heavily and randomly for varied lengths of time, it hasn’t helped my pain and the mood swings and hot flushes are killers. My depression has been spurred on by it as well so I feel really low most days.

How long have you been on it?

[Hidden in reply to Lofty1589]

I hate it too.

It has helped with a bit with one element of pain but done nothing for the rest of pain so still on strong pain relief daily and horrendous side effects to deal with too so not really worth it.

I’ve had 3 injections so far since March and having a 4th next Tuesday which will bring me up to my telephone consultation in July.

They tried to put me on a 3 monthly jab when I was due my 2nd but I rang to cancel as the side effects on the monthly one were bad enough.

When I cancelled they rang me back and reluctantly agreed to stick to the monthly ones.

I feel since my 3rd injection I’ve been getting bad depression and anxiety.

And so exhausted all the time!

At times I literally feel like I could explode with rage and nothing helps except lying in a dark and silent room.

I had these injections before my last operation In 2018 too and when they operated they said it hadn’t reduced the endo anywhere near as much as they’d hoped it would.

It’s just awful that there isn’t better treatments available and even worse that when you try explaining to people how lousy you feel they haven’t even heard of endometriosis.

Well done for pushing for an appointment. I hope it is a successful one!

What scan are you having? Good luck with it xxx

[Lofty1589 in reply to Hidden]

It really is awful. It’s since having the 3mth injection that my Vitamin D levels plummeted - they say the optimum number is 75, deficient is 25 and I’m sitting at 19.5 so that’s no fun. Just trying to massively increase my calcium now.

It’s terrible. I reluctantly agreed to trying it because the constant pain was making me suicidal. Not much change there. I dread coming off it as well because I hated being on the pill (combined and progesterone only) because they made me feel awful as well. I just can’t win.

It’s a pelvic pain mapping scan. Not clue what it is precisely but I think it’s similar to an ultrasound.

[Hidden in reply to Lofty1589]

Ah that scan sounds interesting, maybe they are looking to try nerve block injections or something?

Have you had a referral to pain management?

Sounds like you are having a terrible time ☹️.

My consultant mentioned nerve blocks and pain management referral last time but hasn’t yet made the referral.

Also I saw a urogynaecologist for my overactive bladder who also advised as a result of my pain my pelvic muscles are way too tense so awaiting some “lovely” internal physio therapy.

Just wondered whether that might be contributing to your pain too?

I’ve been off work since December and going to have to resign soon. Hard enough just getting out of bed and washed at the moment let alone sitting in agony nearly 10 hours a day.

Do you manage to work? Xxx

[Lofty1589 in reply to Hidden]

Nerve block injections haven’t been mentioned yet but UAE was - I don’t want to go down that route because I’m only 20 and don’t know what state my fertility is like.

I was under pain management but they discharged me. The meds they suggest disagree with me and a TENS machine doesn’t do much. So they were out of options 🤷🏻‍♀️ Lucky me.

I do plan on asking if some form of physio may help me and I plan on asking for another lap - my now ex-consultant was awful and despite there being clear signs of Adeno refused to acknowledge them - as it was performed by a general gynae. A lot of my symptoms suggest uterosacral ligament endo because most of my pain is left sided.

If I’m honest, I don’t 😅 I’m admin, office based so there’s a lot of sitting. I’m so exhausted all the time and in so much pain but I pile on hot water bottles, take as many meds as I can and try and work through it. My old job was awful and penalised me for needing time off so trying not to do that with this job - which means I’m falling into bad habits once again of pushing myself when I should be resting

[Mheulgio in reply to Hidden]

Hey ladies-reading your thread with interest...had my first Dec inj last week. Just wanted to comment on this particular post about the Physio. I have an over active/weak bladder and it was thought initially this was the source of pain (last year at the start of the pain) and went to a woman’s health physio to help. She was amazing and the ‘internal’ work made all the difference along with ‘bladder training’. It really did relieve the bladder issues! So I would recommend trying that but be sure it’s a woman’s health specialist physio!

Unfortunately all that good work is being undone by this inj that is ‘squeezing’ the monkeys out of my pelvis and putting a lot of strain on my bladder. But at least I know I can get it back.

Hope this now finds you ladies with some progress.

[Hidden in reply to Mheulgio]

Aw thank you for your message.

Do you get like a sensation like all your insides are being stretched on the injection? It’s so uncomfortable!

That’s reassuring to know about the internal physio, I’ve been referred for it but haven’t had an appointment letter through yet because of covid. Xx

[Mheulgio in reply to Hidden]

Yes! I just feel like I have a fist in my pelvis squeezing and twisting! But I suppose it’s a relief from the straight up burning pain that I was having. Not really keen on the bladder trouble it’s causing but I was warned by the consultant it might happen. But she’s says it should ease off after a few weeks. Here’s hoping!

[Hidden in reply to Mheulgio]

Aw I’m glad I’m not the only one who had that feeling. It’s a horrible drug.

I really hope it works for you. More treatment is definitely needed! Xx

[Endokita]

I've recently came off of decapeptyl, took the 3 month injections from Sep19, then end of Nov 19, and last one Feb 20. The twelve weeks took it to 8th May 20. My weight has increased by 2 stones! To be honest I have been eating reasonably well but not calorie counting. Of the whole 9 months I'd say the last 3 was when I have put on the most weight. Its still not coming off and I'm the heaviest I have ever been! Size 16 creeping into 18.

I need to lose weight to go through ivf. This has had a major emotional toll on me...guilt, failure etc...feel my body isn't in my control. I'm hopeful once the decapeptyl comes out of system fully I can sort the weight gain issue. Not looking forward to periods though as it is excruciatingly painful. I was diagnosed Apr 19 via laparoscopy and stage 3.

Decapeptyl wise in addition to weight gain I found the flushes difficult to manage and my sleep was interrupted throughout, still experiencing these symptoms to be honest.

Sorry not more helpful about weight loss - just wanted to share experiences with decapeptyl. Take care x

[Hidden in reply to Endokita]

Aw thank you for your message and experience.

Yeah I agree with the last 3-4 weeks have been a big noticeable difference in weight.

I’ve got a horrible feeling my consultant is going to suggest staying on it for longer but I’m going to have to say no.

Although it sounds vain based on how quickly the weight is piling on I dread to think what size I would be if I was on it much longer.

I don’t understand how they can give you a drug before ivf that makes you gain weight and then tell people they need to lose weight before then can start ivf. It’s so unfair!

I do hope it comes off quickly and I wish you the very best of luck with your ivf xxxx

[Endokita in reply to Hidden]

Thank you 💛. I wondered about the ivf irony too!

Hope the consultant listens to your concerns and sorts something else xx