I'm currently experiencing a myriad of symptoms and I'm beginning to wonder if there's something else at play as well as the endometriosis

I have the following symptoms:

- Bones and joints hurt

- Muscle pain and weakness

- Exhausted

- Memory loss and concentration

- Feeling drunk upon waking

- Bad balence

- Bruising easily

- Little blood spots on skin

- Can't sleep

- Stomach Cramps

- Feeling like someone is sticking a pin in me

- Pins and needles/numbness in my legs and feet

- Headaches

- Swollen lymph nodes in jaw

- Nausea/Vomiting

- Urine infections

- Frequent mouth ulcers

- Eye pain

Does anyone else suffer with this? It's getting hard to function and is really getting me down. I'm also currently on Zoladex (month 10).

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29 Replies

  • Hi Endo Girl,

    I should think that all of these symptoms are down to the Zoladex. I suggest you go to your GP immediately with that list. In particular I'd be concerned about bad balance, feeling drunk on waking, numbness, headaches, eye pain. Put these at the top of the list. I am wondering if there is a blood pressure/clotting issue.

    I am assuming you are not on HRT?

    My personal view of Zoladex is that it should nit be taken for endo as 'treatment'. It is not a cure and it is a very dangerous and powerful drug with potential long term side effects even when administration is stopped.

  • Thank you for your reply. No I'm not on HRT. I'm waiting god my laparoscopy but I've got at least another 3 months to wait. I have an appointment with my GP but the earliest they can see me is the 16th. I'm considering booking an emergency appointment with him. Thanks again xx

  • I think it's all to do with the zoledex !

    When you stop the treatment, these symptoms will start to improve. But it can take 4 months to get fully get out of your system.


  • Thanks for responding. Even with all of these side effects I still function better on the Zoladex than I did without it. It's the lesser of two evils - I feel so exhausted I just don't know what to do xx

  • Zoldex like all the other GNRH drugs have potentially serious side effects both short and long term . HRT sometimes helps, but often bring there own side effects!

    Most ladies go on these drugs out of desperation, myself included. But what needs to be remembered is that these drugs will not cure the endometriosis. They will only put the Endo to "sleep" while the drug is in the system. Once you stop the drug, Endo always comes back.

    What you need is a treatment option that works for you without the serious life effecting side effects of the GNRH.

    Are you being treated at an Endo centre? If not I would recommend you ask for a referral to one of these.


    Best of luck,

    Barbara x

  • Thanks Barbara - I'm only being treated every month with Zoladex I'm not being treated at an endo centre. I paid initially to go private and see an endo specialist as my GP said there was nothing wrong with me. Couldn't afford to have the op privately (nearly £4000) so I'm on the NHS waiting list for a laparoscopy. Do I have to pay to be under the care of an endo centre? xx

  • You can see an endo specialist privately and then switch to nhs but still be treated by them. What came out of the private appointment?

    Did your GP refer you to a gynae or are you solely under the care of GP?

  • The specialist said that I had nodules of endo inside my vagina that he could feel on examination - due to me trying all other contraceptive options he suggested that I go on Zoladex immediately to halt the progression of endo whilst I wait for my op. I had to ask to be referred to a gyne by my GP the waiting list was 6 months. My partner couldn't bare to see me wait that long and booked me to see a specialist. Right now I'm solely under the "care" of my GP. I don't think that he really understands the effect it's having on my life. I've just booked an emergency appointment to go and see him for 11am today xx

  • Endo centres do treat ladies on the NHS. And it's your right to request a GP to refer you to one of your choice, as an NHS patient.


  • Thank you!! xxx

  • My pleasure. Let me know how you get on and how you are feeling.


  • I will. Thanks again for the info, advice and support xx

  • Hi, I get a lot of these symptoms too... however I am not on zoladex. I have been struggling really badly with muscle and joint pain, from my hips right down to my ankles and sometimes even my wrists. My balance is so bad that I sometimes fall over when getting changed and my concentration has really been affected lately. In fact the only symptoms you mentioned that I don't have are swollenymph nodes in the jaw, mouth ulcers and urine infections. The only medicine I am on at the moment is co-codamol, which I've been on since December. I am starting to wonder if I have something else wrong with me as well as endo.

  • I really feel for you and I'm sorry you have to go through all of that. I will let you know what the doctor says to me and maybe that info will help you. It's so worrying. I wish there was more awareness of this horrible disease. People seem to think that it's just bad periods xx

  • Thank you, I feel go you too... however I must say it's kind of reassuring to know someone else is having the same symptoms as I was starting to think I was going mad! I do too, people don't think we're suffering because we don't 'look' ill. I've even trying to explain to my manager that it's not just a bad period and that the pain is not only when I'm on my period... but she doesn't even try to understand. Considering it's supposedly so common, you would think there would be more awareness and information regarding it. Good luck at the doctors, hopefully they'll be able to help you xxx

  • Thank you. Yes it's such a relief to know that I'm not the only one. I feel like a hypochondriac sometimes as my list of symptoms gets ever longer and I hear myself complaining more and more. At the very least I hope they can manage my pain and lack of sleep somehow xx

  • The doctor doesn't know what's wrong with me. He has signed me off work for a week whilst they try and rule things out. I've had a blood test done, he's put me on antibiotics, more pain meds and tablets for vertigo. My blood pressure and tempurature are up. It's just trail and error until something works now xx

  • At least he's trying to find out the cause I suppose, I hope they find out before they poke and prod you too much more! I phoned my doctor this morning to make an appointment but couldn't get one... the doctor phoned me back and I asked for stronger pain killers (the co-codamol just don't do the job anymore). But she's just given me more co-codamol and told me to go back if they still don't work. Feel really fobbed off, but there's not much else I can do really. Last time I went she checked my blood pressure and did blood tests to check on the bruising and feeling faint, but they all came back okay. Starting to think it's all in my head! Xx

  • Oh ladies I know how you feel I get fed up listening to myself!

    My symptoms are:




    Swollen pelvic nodes

    Pain pelvic and back


    The list is endless and to top it off I saw my consultant last week and he said categoricly that my bowel nausea and lymph nodes weren't to do with endo so now I have had to go back to my gp for various other tests and to rule out any other possible reasons before I can progress it's so frustrating the level of ppl not understanding what it does to you mentally and physically!

    Good luck all. X

  • Bless you. I hope they manage to pin point the problem for you. At least we know we are not alone xxx

  • I am not on zoladex and I feel like you do everyday!! What shall I blame my symptoms on?

  • I don't know myself yet. Once I find out from the doctor what's wrong with me I will let you know. In the meantime I urge you to make an appointment with your GP. I hope you feel better soon xx

  • I have been to see my GP hun and she was absolutely RUBBISH. Then last week I went to see my consultant instead she wasn't too helpful either. She has put me on the microgynon for 3 months solid. I am so upset about it all because they don't seem to help much at all. Hope you feel better soon as well. X

  • Awwww bless you. I really feel for you. Not being heard or understood is mentally exhausting. You really need to force the issue with your doctor. Keep a detailed diary of your pain and symptoms to show them xx

  • Hi Endo_Girl33,

    Wow, I am glad I have come across your post! I too have been suffering from the same symptoms, with the exception of; swollen lymph nodes in jaw, urine infections and mouth ulcers. With the issues aside its nice to know I am not alone with the majority of your symptoms - I feel like I'm going mad and being a complete hypochondriac! I hope it also gives you some comfort to know that you are not alone! I totally understand about how you feel with regards to it getting you down! For me personally I always feel I have been robbed of my quality of life as I knew it to be before all these symptoms flared up. Just try to keep positive and try to take charge of finding out why you suffer with these symptoms. Although not easy with the NHS, I know!

    Last year it was just the stomach cramps and tiredness that was affecting me but as the year has passed my eye sight, balance, coordination, concentration, memory has started to affected my life and has gradually got worse. I started to get pins and needles and numbness in both my legs last year, that comes and goes from month to month.

    Headaches seem to have noticably started when I first started Cerezatte Dec 13 (stopped in May 14). I started a course of Zoladex (3.6mg every month) in March 14 and oh my have the headaches got worse!! Getting my eyes checked tomorrow, just to rule that out.

    Constantly exhausted/tired - fatigue is a symptom of Endo - strange isn't it: we are constantly tired but yet cannot sleep, very frustrating!

    I cannot confirm whether all these symptoms relate to Endo in my or your particular case - although these symptoms have only recently cropped up in the last 12 -18 months since the Endo flared up, coinsidently - I have had Endo since about 15 years of age, now in my mid 20's its decided to go all out and let me know about it ha!

    I agree zoladex is the lesser of two evils - better than not on it but yet still not quite right eh.

    I hope your week off provides you with the much needed rest and you get some answers from your tests or at least good direction from your GP as what to do next if everything comes back clear.

    Keep us all updated

    Best of luck :) xx

  • I've just come back from an Endo Centre this morning. Can't believe how amazing the gynaes are in comparison. I highly recommend it, Endo_Girl, I was referred from my normal gynae - he admitted most gynaes are too proud to send you to someone who knows better so for the sake of that, don't wait for them to suggest it, ask them to refer you :) I spent 20 minutes with this guy and its the most positive treatment plan I have in the decade that I've suffered from Endo et al.

  • What's the plan of action for you ?

  • Ill have to summarise my history so my next steps make sense -

    Bad miscarriage lead to scan where ovarian cysts were found. Laparoscopy done and stage 4 - 5 Endo found on all pelvic organs, laparotomy done at the same time to remove all Endo.

    All forms of pill tried and failed, nothing would stop my periods of hell, zoladex made me suicidal although it stopped the Endo from spreading (10 months). Mirena tried but it wasn't inserted correctly due to tilted pelvis so 8 weeks of labour pains then removed due to pains.

    Norerthisterone AND depo-provera stopped periods but dropped depo due to it making me bleed. 30mg of nore a day. Gained 5st on all this medication that I can't lose.

    I have been left with severely extensive adhesions everywhere and my pelvis now looks like a car crash due to everything being stuck together and in the wrong place. On Morphine 24/7 plus several other ridiculous pain meds to stop me from feeling the tearing everything I breathe and move. Had several cervical erosions too which required me to go under for surgery.

    No one has been in there since 2005 so he's doing another lappy to remove all adhesions, use adhesion-prevention gel, remove any Endo, put dye in my tubes to check fertility, insert the mirena coil again properly and bring me off nore so my cervical lining can grow back healthily which will provide less chance of me getting cervical cancer and let my body have a period every 3 months to get my body back in sync! Phew!!!!

    Sorry it's so long :') if you don't know my history, my new plan wouldn't make sense! :)

  • Hi there endo girl I don't know if this helps but I have fibromyalgia (which is connected to endo, which I also have) and the symptoms your saying you have are very similar to mine I'd ask your dr to have checks done to rule out cfs also!? Hope this helps x also have never had zoladex so couldn't comment whether that is causing your pains etc x

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