Will this belly stop growing??: Today I... - Endometriosis UK

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Will this belly stop growing??

Clarabelly profile image
25 Replies

Today I woke up with the biggest belly I have had since pregnant.

I can only assume, coupled with period pain and back ache, it's a side effect of the prostap injection.

Nobody tells you that this drug will do this to you. Yes you know you're going to get hot sweats, insomnia etc but this today has nearly tipped me over the edge.

I can't get my usual clothes on and painkillers don't work.

So fed up and down :-(

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Clarabelly profile image
Clarabelly
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25 Replies
Impatient profile image
Impatient

Oh poor you. The side effects of GnRH drugs are such a long list and much more than is ever printed on the patient advice leaflet.

If the tummy is all bloat, then might be worth having a word with your GP for some tablets to get rid of the excess water your body is currently stock piling round your middle.

But be careful not to dehydrate, it might sound daft but keep drinking water to flush you out especially in the current balmy days where it's a bit hotter than normal for the UK. Dehydration can cause bloat too. It doesn't make a lot of sense and you are probably thinking If I have another cuppa it's going to add to my woes, but in truth you need to keep your kidneys working flat out to get rid of all the excess chemicals your body is stockpiling, and that includes the chemicals that are causing you to bloat.

He might want to check your blood pressure too as the drugs can play merry hell with blood pressure and with that you can stock pile fluids to the point it gets really uncomfy, in ankles, legs, tummy etc.

I was getting anxiety attacks and heart palpitations too with Zoladex which increased my BP a lot. It did settle down then came on again and then settled.back again. Not much warnng, and rather scary when it happened.

Hope you're feeling deflated soon, and a lot more comfy.

Clarabelly profile image
Clarabelly in reply to Impatient

Sorry I answered you by leaving a comment on the thread, am new to this! X

doubleL profile image
doubleL

I am exactly the same - on zoladex but my belly feels massive infact my whole body feels massive I havnt put any weight on but just feel so swollen and bloated. I feel like im going to burst out of my dress today at work - its really not good.

Its hard to not get really down about it all people just say to me now well atleast you dont have your period now, well I actually feel like killing myself im so depressed so i dont know whats worse!!!

Hope you feel better soon xx

Clarabelly profile image
Clarabelly in reply to doubleL

Thank you, there's a common theme becoming apparent, the bloating is normal!! Hoping the pain and discomfort is too :-( x

crystalgirl profile image
crystalgirl

Hi When I had bloat found cranberry juice helped,and also helps yours urine to be a little less acidic.I know its easy to say but dont get down,I remember too well when I was hosting an event for my company,couldnt do my skirt up,tried various,I received a telephone call during me having a nervous breakdown,got completely flustered,realised the time ran out of the door grabbing my coat,got on the bus,when I arrived in the office,only had a petticoat on,went to the ladies and waited for one of my colleagues to turn up,and got them to buy me a skirt.I can laugh about it now,but then just wanted to cry and jump under the nearest bus.after that made sure i had skirts two sizes bigger then my normal just in case Crystalgirl

Clarabelly profile image
Clarabelly in reply to crystalgirl

Thank you for your advice, am starting to feel like I am not alone x

Clarabelly profile image
Clarabelly

Thank you. Still inflated today , nauseous and uncomfortable. Spoke to the Endo support nurse who doesn't think it's normal for prostap to do this!!

I will drink plenty and get to the GP if not settling.

I am trying to give it a fair go at persevering with the course as I have to make a decision as to a pelvic clearance based on the effectiveness of it. My consultant believes it has spread to other parts of my body as I have been left I diagnosed for 24 years, hence the need to remove the ovaries.

Sometimes it just feels like I can't climb the rest of the mountain. I appreciate its not the most terrible disease to suffer from but it's certainly far from pleasant :-(

crystalgirl profile image
crystalgirl in reply to Clarabelly

Hi Climbing a mountain,we may not be able to do that,but as every day goes by and you learn to accept,that is your personal mountain,When I am feeling really bad,I set myself a task like cleaning the oven,or going through drawers,it may tae longer than a day,but once you have completed you feel that you have achieved something however small Crystalgirl

Clarabelly profile image
Clarabelly in reply to crystalgirl

Sorry I have just read this, there seems to be no time order to the thread!!

You seem to be using the same coping mechanism as me with the tasks- my house has been become so disorganised since being ill and I try to just do a little at a time. I have even recently found a lady to come in a few hours a week to help.

Well here comes another nights disturbed sleep!!

Good night everyone :-) x

Justlovesjewels profile image
Justlovesjewels

Hi

I just had another monthly Zoldadex injection last week. Though I had a full Hysterectomy at the age of 28 and I'm now 48 I've had no monthly problems for 20 yrs. at the age of 18 while under going an operation for a tilted womb, I was told back then I had Endometriosis. Now that Endo has come back to haunt me !! I'm due to have to an Operation in Sept for the removal of 7 cm cyst ( last 8cm one ruptured oct 2012 ) and Ovaries. The Zoldadex has given me every symptom possible except the sweats and flushes. Never felt so poorly for so long in my whole in tire life. The doctor suggested Tibolone pill to take every day which works along side the Zoladex. The severe headaches have gone and tummy and boobs are back to normal. The only thing, I get is severe tiredness. I have worked out though, my body is going through a monthly cycle again. beginning of injection everything swells up. ' tummy, boobs, then middle of month I go back down to normal, towards end I start getting pain back. Sometimes it's so severe I get to the point of wether I should go back to hospital in case this cyst is rupturing. Within the first 2 weeks of having the first injection, i

Clarabelly profile image
Clarabelly in reply to Justlovesjewels

Thank you for taking time to talk to me. Yes am wondering if its almost a phantom monthly cycle as I have period type pains too.

Lets hope removing these pesky ovaries will do the trick! X

crystalgirl profile image
crystalgirl in reply to Justlovesjewels

Hi So Sorry,a nun told me that we are never sent anything we cannot bear,but sometimes I wonder.Like you I feel if I am under the cosh,and when this set of symptoms happened I thought it was the Endo calling,then when I was told it was M.S I was wishing it was Endo.But at the end of the day,you cannot just take an Asprin you grit your teeth and just hope its going to be painfree, although a lot of people have found some relief in swimming,Crystalgirl

Clarabelly profile image
Clarabelly in reply to crystalgirl

Oh am so sorry to see that you are suffering with MS as well. Life we find doesn't seem to deal just one blow at a time does it?

Does the nun mean that the more we are sent to bear then the stronger a person we must be?? I must be superwoman but that's another story!!

I am already considering swimming regularly. I went in last week on my hols in a heated pool and it felt great, will let you know when I get going with it.

Take care and thank you for your kind words x

Justlovesjewels profile image
Justlovesjewels

Opps sorry accidentally pressed submit lol.

As I was saying 2 weeks in to the first injection I felt pregnant again, it was so strange, emotions up the the wall, sick and god knows what else. Tibolone has stopped this.

If you are suffering, speak to your doctor and ask about Tibolone. I am of age " apparently " to start going through menopause, so what the Zoladex is doing for me is shutting down my Ovaries ready for Operation plus meant to be helping ease pain. With that though it is putting " BANG " straight into menopause. What I'm am saying is everyone is different, we are all put on Zoadex for a similar reason but they may not be for same symptoms.

Speak to GP preferably ( not being sexiest here at all ) a female. They seem to understand a little more of what we go through.

Hope this helps you. Like I said, speak to GP if worried. :-)

Clarabelly profile image
Clarabelly in reply to Justlovesjewels

Hello sorry missed your post too!

I decided not to take the hormones as the prostap was given to try and simulate my level of pain relief that would be achieved if I have a pelvic clearance.

Therefore giving me more hormones may not give a true reflection.

I am back at Endo clinic on Monday so I am going to discuss other options with them- I read somewhere vitamin E and C are good for the side effects of prostap- will let you know!

Take care and thank you x

crystalgirl profile image
crystalgirl in reply to Clarabelly

Hi Clarabelly hope you are feeling better today Thursday and that you are bright eyed and bushy tailed.Crystalgirlxx

crystalgirl profile image
crystalgirl in reply to Justlovesjewels

Hi When I spoke to my Consultant,about the sudden onset of hormones after hysterectomy,just suddenly crying for no reason,he explained it as my body had been in some form of hibernation,and as soon as it felt it wasnt fighting anymore,it let go and I experienced what I should,he then explained Hystere mean hysteria or seat of all emotions.Crystalgirl

LadyPenelope profile image
LadyPenelope

You poor dear! Endo is one of the most terrible diseases to suffer from; The symptoms are so many and so varied, theres no known cure and sometimes the medication we take to help us create horrendous side effects. I've had stage 4 endo for 23 years and had every procedure you can think about. My heart really goes out to you. I've found that you need to keep pushing and insisting otherwise you don't get the care and medical attention you desperately need. Most people out there have no idea what we have to go through, and because we look so "normal" sometimes they even think we are making things up. I have friends and family who think I'm an attention seeking hypochondriac!! Please do not give up, keep at it and it will get better, or you'll find ways of coping. My "beer" belly also comes and goes. I have clothes from size 8 to 14 depending on which if my bodies I wake up with. I really wish you all the best...

Clarabelly profile image
Clarabelly in reply to LadyPenelope

Thank you for all your reassurance. I too have stage 4 and know already that just after 6 months its back with more adhesions.

Clothes in a variety of sizes are faulty becoming my best friends!

I found that after my op in which they untangled my large bowel I put on weight- I wasn't absorbing my food properly before and don't think I ever had since been a teenager.

But even so I too wear between 8-14 at the moment. X

Justlovesjewels profile image
Justlovesjewels in reply to Clarabelly

My heart goes out to you. It's like an invisible living nightmare.

No one has actually stated if I'm in stage 4 and I've never asked. But apparently it has spread all over pelvis. I have been suffering for years but as I had my Hysterectomy 20 yrs ago I never in my life thought it was anything to do with my Ovaries. When they told me at the age of 18 when I had first Op. for tilted womb they never explained what Endo was, they just said ihad it, could be a problem falling pregnant. Even after Hysterectomy at 28 yrs nobody explained. So I was just going through life thinking I've always got a bad stomach eaten something that didnt agree Or acid as it effects my area just under ribs. All makes sense now, so when I get the pain I know what it is and know how to deal with it.

I do hope things for you get sorted, and that your pain will go for good. Good luck for the future :-)

crystalgirl profile image
crystalgirl in reply to LadyPenelope

Hi you sound just like me,I felt all alone,when other women were planning babies,I was told that I would have to have a hysterectomy at 25,but you just learn to live with it,now I have another obstacle thrown at me,I have been diagnosed as having M.S and this one is not easy lots of pain and fatigue,but I say to myself there are people worst off then you.Crystalgirl

greyass profile image
greyass

Hello ladies, have you tried apple cider vinegar, it's very good for the fluid retention, I took on more water than the titanic when I was on decapeptyl and this really help!

Clarabelly profile image
Clarabelly in reply to greyass

What is the recommended intake for this?

Clarabelly profile image
Clarabelly

I would just like to say a big thank you ladies for all your kind helpful advice.

Although I have had Endo for many years, this is the start of my journey as I just got my diagnosis in January after having to see a gynaecologist privately I might add.

I am angry, frustrated, scared- at the possibility it's in my lungs etc- waiting more investigations.

But when people look at me they don't see all this because its an invisible disease.

Am sat now at home trying to work- I couldn't work full time for an employer- as some days I sit on my bed and work in pjs!!

I am sure you all echo my sentiments in that I just want a life back!!

Hope you are all managing today and smiling like I guess us lucky ladies just have to xx

Justlovesjewels profile image
Justlovesjewels

Ladypenelope.

That is so true, what you have just written. Exactly how I feel. Each morning a different body, one day good, another bad. I'm size 10 going on size 14 too. We are going away this Sunday to Greece for two weeks which means I will be going trough middle to end stage of monthly injection. In fact I will be a week late for next injection. So I'm hoping the Tibolone keeps doing its job. Taking flowy dresses in case tummy is still swollen lol. Thankfully my Hubby is very supportive. I think the rupture last oct frightened him. Like you say we suffer but look normal. He now knows I'm suffering and not being a whimp. Lol

I have to add I've been very lucky with Specialist, after the first rupture I was told by a gynie doctor, " it's ruptured all is ok now, see you in 2 yrs to see if its grown " ???

My GP said no to this in march when i was getting severe pain back. you need a referral. Then my new specialist took over within weeks, sent me for an MRI scan ( this was April this yr ) have Op due sept but I have to go back to see him in Augast. He is brilliant. I feel blessed I'm being sorted. Thank you for your good wishes. Hope they will sort you out soon too. :-)

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