This is my first post since joinging a month or so ago after a family friend recomened the site to me .. sorry it's long winded but feel the need to share my story to see if anyone can relate to me or can give me any advice .
. I was late starting my period or late compared to the girls I went to school with I started the Christmas before my 16th birthday and from day one I was in constant pain and my periods where unbelievably heavy and so mixed up .. i could bleed for 2 weeks have 3 days of spotting bleed for another four days then not bleed for 6 weeks then start bleeding heavily again but there was no specific pattern to my cycle it was just as and when my body decided.
Eventually they fitted me with a marina coil . Just before my 18th birthday which was fantastic for 2 years until June last year I started spotting , bleeding after sex pain during sex and then I started getting a pain in my left side which was painful but bearable with pain killers until October where one night I collapsed with this almighty pain I'd never felt anything like it in my life I spent a week in hospital having scans on my kidneys and bowels which came back inconclusive and I was sent on my way .. I ended up back and too for weeks till I saw the gynaecologist again who said it was my womb contracting to get rid of the coil .. removed it and sent me on my way . But the pain was still there crippling to the point I had to leave my job because I had no say in when the pain was going to start but once it did I couldn't move . With scans coming back inconclusive I felt like I was making it up like no one believed me evem my own family where starting to have doubts because every time I was returning home I didn't have any answers. So as a last resort they decided on March the 6th they would give me a laparoscopy. I was called in on March the 20th 3 days after my 21st birthday and taken to surgery
The results where that I had small cysts developing on my left ovarie and I was covered all over my womb and ovaries front and back with endometriosis... The surgeon said unfortunately they couldn't burn any of it away as there was too much and it would cause too much damage to remover it all she said it was a layer as apposed to clusters ? She said given my age there wasnt alot they could do in surgery. Following a rough 4 days in hospital (and a few complications nothing major thankfully . ) I was started on a course of zoladex .. and since then I've been on some sort of roller coaster .. which is my point I'm trying to get to .
I feel like I've just been given my results the injection and sent on my way.
I do understand what is after googling but I don't have any advice on coping strategies and I wasn't really given any advice on side effects from the injection I was just asked if I was planning on having children and if so when ... I do eventually want children just not yet it's not something I'm thinking about for a good 2 years + ..
Some of the side effects I've read people have had on here which I have are things like :
hot flushes .. ridiculously hot! I wake up in a pool of my own sweat!
Severe head aches
Vaginal dryness and low sex drive (if any) luckily for me I'm in a relationship where my partner is very understanding
Severe back ache ...
but somethings I dont know if it's just me or if they're side effects
•Recently I'm very emotional I can't control my emotions if I start crying I can't stop I cried the other day because I couldn't get a day off work. Which just isn't me!! I'd normally just get on with it
•Im in a fowl mood for no particular reason my partner breathing too heavily puts me in a bad mood . I feel like I'm pushing everyone away but I think it's because it was a bit of a shock with the surgery I wasnt expecting it to be as invasive as mine was it all happened so quick and I'm trying to get my head around it all ...
•I'm also so sensitive.. I'm taking everything to heart. I feel as though I'm fighting a loosing battle with myself.
•I'm so lethargic I can't seem to catch up on my sleep I can sleep for hours on end without even waking up.
•I'm aching all over .
•I feel bloated all the time i still cant wear jeans or anything that fastens round my stomach because i get quite alot of pain around my belly button after an hour or ao but the hospital havnt said anything about this either when ive mentuoned it .
•I'm quite light sensitive I've noticed recently
• And as strange as this sounds my hair has been sore like when I move it right at the root and also my hairs been falling out almost in clumps I'm surprised I have any left it's ridiculous !!
•my feet have been really swollen.
And to top it all off I don't know if i'm just being a hypercondriac And making it up ?
I would be grateful for any tips advice feed back or to just know that I'm not alone . Thank you for taking the time to ready I know it's long but I appreciate i!!
♡x
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Joanna
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All the symptoms you list by bullet point would be to do with the Zoladex. It is a very powerful drug that messes around with your pituitary gland and can cause internal havoc not just physically but mentally and emotionally. My theory is that doctors don't tell you about possible side effects because if they did nobody would take it (and my conspiracy theory mind says that they wouldn't get paid by the drug company). Some of the side effects can be longterm even when the injections are stopped.
Zoladex will not cure your endo. It will return one the injections have stopped. Zoladex is a drug for inexperienced gynaes to rely on. You don't have to take it. To demonstrate how powerful it is, the manufacturers recommend it only be taken for 6 months in a lifetime. It's like trying to crack a nut with a sledgehammer. Some women love it because it works fir them but ultimately it's a very big gamble which unfortunately hasn't paid off in your case.
It's a disgrace that your gynae gave you no information about Zoladex prior to doling it out and even worse that she did not outline a future plan for you or inform you that you could take HRT to counteract the side effects. I am also very concerned that she said you were too young to operate on. She clearly doesn't know what she's talking about. Please be aware that many general gynaes are not sufficiently educated or skilled when it comes to endo and you seem to have ended up with one of those.
The Zoladex might work to your advantage. I'll come to that.
What I suggest you do is return to your GP and say you want to be referred to an accredited endo specialist. If this is met with refusal, say that you have endo therefore you need to be under the care of an accredited endo specialist. Endo is a complex condition that has a specialism all of its own so it makes sense to be referred according to your condition. General gynaes are just that 'general' and are often ill equipped to deal with endo and for some odd reason don't have the wherewithal to put their hands up and simply refer you on to an endo specialist.
Once you have convinced your GP of the need for referral tell him/her who you want to be referred too. You have the right to choose who you see on the nhs and your GP should have given you a choice of specialists. nhs.uk/choiceintheNHS/Yourc...
The charity Endometriosis UK has a young ambassador currently aged 18. She recently had surgery to remove endo by an endo specialist so I think you are being fobbed off on the subject of age. Here's Alice's page with a link to her blog endometriosis-uk.org/alices... The site has plenty of useful information and support in the form of local support groups (check to see if there's one near you) and a helpline.
Zoladex is sometimes used to calm down extensive endo in a bid to increase the success rate of a treatment op and enable it to be done by keyhole so this might work to your advantage.
However, your symptoms really seem to me to be too much to cope with. You have 2 choices here. If you are on monthly injections then you could simply stop treatment and wait for the Zoladex to gradually wear off. If you are on 3 month injections that's more tricky. If you want to continue with the Zoladex or are on 3 month injections I suggest you ask you GP for Livial HRT to counteract the side effects. HRT has oestrogen which will reduce the efficacy of Zoladex in keeping endo in check as endo is driven by oestrogen. However, on balance it is advisable to take given your symptoms. Livial has the lowest dose of oestrogen. The most important reason to take the HRT is to reduce the risk of osteoporosis which is another potential side effect of taking Zoladex. I'll bet your gynae never mentioned any of this which effectively took away your right to choose.
You mentioned that you collapsed in October in terrible pain. If the pain was in the lower right or left side of the abdomen it could have been a ruptured ovarian cyst. By the time you were scanned the cyst would have gone down which explains why they didn't see anything. Or your endo could be sticking different parts of your internal organs to each other causing a great deal of pain. This will not always show up on a scan.
You are absolutely not a hypochondriac and you certainly aren't making it up. None of this is your fault. I really feel for you and think you've been let down. Make that appointment with your GP now and make sure you take good care of yourself and pamper yourself a bit. Sending hugs to you. xx
I'm do sorry to hear you feeling so down and I don't blame you and it's certainly not all on your head. I think you have bein tray we awfully you must go back like brownlow previously said in her message to a accredited endo centre. I really do feel for you it's a big thing going through an operation but to be told they ant do anything after going all through that is upsetting for you.
I struggled mad silent with my emotion after having my lap I couldn't bare the thought of having to deal with a vile painful disease that is chronic and incureable. This is when I joined endo uk and I have found it has massively helped me understand a lot more about the disease because like you I was told nothing and just left to get on with it.
I have tried really hard to tell myself that this disease is part of me now it's not going to go away and it sure as hell is by going to beat me. I still suffer in a lot of pain but sadly I have to accept this is the quality of my life now and get oh with it until they find a cure which I'm praying one day they do.
I still have down days when I'm in a lot of pain but I'm sure having this disease plays havoc with your emotions and causes depression. Be strong and please go back to your doctor and may be try some other mediation as it doesn't sound like it is he one for you. Good luck and stay positive sending big hugs.
I very much agree with what Browlow has said on seeking referral to a specially accredited Endo center. If you are met with a refusal, also advise the GP that it is your right under the NHS Constitution that you be seen at a healthcare provider of your choice by a doctor or your choice anywhere in the Country. If they still want to refuse you, put it in writing to the GP practice and advise this is a complaint. You should receive a positive response fairly swiftly!
As the others have said, you are not alone! Keep going!
Really really appreciate th feedback!! Sorry i didn't make myself too clear on the age matter she said if I was older and I'd of had children they would of given me a hysterectomy but given my circumstances they obviously couldn't perform one . I am only on the monthly injections and it is only for 6 months then they said I will be given a pill to take back to back and as u said it just slows the process doesn't cure it . But I feel pressured into having children like it's some sort of quick fix because I know when ure pregnant it goes and when in the menopause which is why they have induced me into one now I was told first off it wouldn't effect having children but then reading up on here and the Internet seems to suggest different which sent a wave of emotions through my body so to contradict myself completely I was devastated reading that it's like I'm not planning on a family yet but when you get told your chances may be reduced it sets alarm bells ringing .
They said the pcos was only just starting it wasn't fully developed .. would it look like this if one had burst ??
They didn't check anything to do with my womb or anything they where convinced it was appendicitis then kidney stones then bladder and when all came back clear they where stumped . Till I went to my gyne an he said its because it's a foreign body your wombs been contracting like labour to get rid of it.
Appointments in my doctors are like gold dust emergency appointments have a two week wait !!
I don't think there is enough awareness about the illness/disease I feel like I did when I had glandular fever as a child .. because people can't see it on your body they struggle to believe you and can't fully understand the actual pain your in. Because if it was like a big visible lump people would think of that must be painful ? Does that make sense .
Hi very sorry to read of the turmoil you have been through by having seen a general gynae who is not best placed to treat your condition. I also would definitely recommend you push to see a specialist endo consultant / accredited endo centre rather than a general gynaecologist. Unfortunately endo gets lumped in with gynaecology but it is far from just a gynae problem and needs to be treated by a consultant who has gone onto develop specialist knowledge/skills relating to endo and endo surgery.
Have a look at Mr A K Trehan's website which is very informative. It will arm you with informattion regarding endo and endo treatment and there are other accredited endo centres on the NHS as detailed by other posts above.
I can also recommend the following books:
Stop Endometriosis and Pelvic Pain by Dr Andrew S Cook (top USA Endo Surgeon Consultant)
100 Questions and Answers about Endometriosis by by Dr David Redwine (retired top US Endo Surgeon Consultant (acknowledged as world leader in the field)
A hysterectomy or having children are outdated 'treatments' for endo and do not always work. Many women report a return of symptoms following hysterectomy even with removal of ovaries too. If you have adenomyosis (endo in uterine wall) then a hysterectomy can be considered. Removal of the uterus only will of course stop periods which is also a consideration. Endo can also return after having children. Your gynae is from the dark ages and doesn't know what she's talking about. A 2 week wait for a GP appointment would be worth it to get away from her.
Ruptured cysts can refill. I don't know much about PCOS.
Restless legs can be caused by a lack of magnesium. This deficiency is often present in endo. It's a key precursor to an important detoxing agent called glutathione which is also lacking in women with endo. Glutathione helps rid the body of oestrogen and many toxins. If levels are low then our oestrogen stays high and endo flourishes. Magnesium also acts as a regulator of calcium, potassium and sodium and affects muscle toning. Without it there will be too much calcium in cells including muscle tissues and this has a contracting effect which can lead to restless legs and is also possibly a reason for your uterus contracting. In the search box top right search for 'magnesium' and also 'restless legs'.
I hope you get a GP appointment soon to get yourself seen to properly and please fight for the care you deserve. xx
Sorry to hear that you are having such a bad time. Brownlow gives excellent advice. The zoladex is an awful drug. I have one month left of it in my system(Decapeptyl- same thing) then I never want it again. All the symptoms you described I've had too. It's a rollercoaster. I had 6 weeks hrt add back which did help with the symptoms but have had to stop as I have breast cysts too and something in the hrt caused them to fill up uncontrollably. The breast clinic were unimpressed with me having had it- so something to be aware of. Please don't feel alone with this. There is always someone to talk to here. Hope you get sorted soon.
I was offered them injections 6 mths ago after my first appt with my gynae. I was having lots of other medical stuff happening so the gynae said she didn't want to do a lap until other things had settled down. She gave me a leaflet on the injection n told me to see my gp. But I read all about the injections n they looked way to scary with the possible side effects. So I ended up not having them but still had to wait 6 mths for next appt. she said if I get preg that it will cure endo but it doesn't seem like that's the case from what some of you have been saying. This is such a complicated condition. X
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