I feel like I'm going through hell...and I have no one to talk to

Hi all,

I have only recently joined this site as I am at my wits' end. I hope you don't mind me sharing but I am so scared about the diagnosis and I feel completely alone.

I've had abdominal pain since I was 18. After removal of appendix and three laparoscopies they finally found the endometriosis two years ago. This was only because my gynae consultant managed to figure out what it was and knew what he was looking for. I've also got endometritis which I believe is inflammation? I had the mirena coil fitted and was prescribed a course of Zolandex for six months. Everything after that was fantastic and in my check up he said that he didn't forsee any problems with fertility.

However, three months after the Zolandex stopped my periods returned and were heavy and regular. And with the periods came the pain that got worse every month. For the last two months the pain was indescribable but my periods had been reduced to spotting. I was hospitalised a month ago. They couldn't find any cysts but found endometriosis again. I was also suffering with an impacted colon because the pain killers had had an adverse affect. I'm back on the Zolandex now but this time it isn't working. My gynae consultant has said that there is one more drug he can try and then he is out of ideas. Not only that, but I cannot take opiates now so I am forced to cope with strong anti-inflammatories and paracetamol. The pain is indescribable and I cant work.

There has been talk of a hysterectomy but I'm only 27 and desperate for a family. Does anyone else have a similar situation? My consultant says that I can only stay on Zolandex for six months and if that doesn't work then he doesn't know what else to suggest.

All I wanted to know was a) do you have any pain relieving tips that might help me? b) is there anyone who has a similar situation and can offer any advice?

Thank you for listening :)

31 Replies

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  • Hi, I am very intrigued to know what do you mean by saying that zoladex isn't working this time. I am currently on zoladex. I have nearly 7cm bilateral endometriomas....my bleeding has been a havoc. I am on my second injection but my bleeding and pain hasn't settled. This is the first time I was given zoladex.

    For my pain I keep on taking painkillers but amitriptilne also helps. It number the nerve ending, so one doesn't feel the horrendous pain.

  • So sorry to hear you are in so much pain, it really can be debilitating. I am currently on top dose of Cocodamol, top dose of Tramadol, Buscopan, Voltarol suppositories, and now Oramorph, .... still, I am in pain. One thing I know for sure that brings me great comfort is my trusty old hot water bottle. And now I also have a heated cushion, a little electric blanket inside a soft cushion, with 3 temperatures, and that switches itself off after 75 mins (I think) in case you manage to fall asleep.

    Hope you find something very soon to ease your pain even a little, and sure the lovely ladies here can help you with your concerns. I am as yet undiagnosed but on waiting list for a Lap,

    Amb xxx

  • Hi, I just wanted to let you know that you are not alone and send you some big hugs. Lots of the women on here are going through similar things and you will find a lot of support here. You say that a month ago more endo was found, was it treated at the time and if so how? It seems that excision surgery where it is removed rather than lasered is more successful. If your specialist isn't an endo expert then I would advise going to see one. It is very scary but if you need advice you are in the right place as we have all been through the same things. I too am making the hysterectomy decision but I know I have endo on my womb so it will definitely help. Sounds like you really need to see a endo specialist, there are specialist centers around the country (for a list of where go to bsge.org.uk) and if you feel really down there is also the helpline xx

  • Hi there, I will agree with Eggcustard, did you have excision and ALL endo removed or only some? Or was it lasered? Its very important what exactly was done, because with laser usually the root doesnt come out and endo re-apprears. And even with excision if not everything was removed, then you might suffering from more endo tissue.

    You didnt mention where the endo was found too, if its not in the womb, hysterectomy wont solve your problems completely (sometimes not at all)

    I would suggest you find another endo gynae (for 2nd or even another one for 3rd opinion) and see what they have to say.

    There are various hormonal treatments too, not only zoladex. And of course pain management clinics that will help you make a plan and manage your pain.

    Good luck, big hugs xxx

  • Hi all,

    wow, I am so touched that you took the time to read and respond to my blog. For the first time in months I don't feel so alone.

    Amb43: I tried the hot water bottle last night and it offered some relief! Unfortunately, due to my colon I'm not allowed to take opiates so any other pain killing tips would be gratefully received!

    Jojo & Eggcustard: My endo was treated by lasering last time; they didn't mention anything about excision. My endo is in my womb and in my pelvis too.

    I can't believe that you guys seem to know more about endo options than my gynae consultant! My doctor recommended him because he was 'the best specialist' but he didn't mention any other hormonal treatments. the treatments that are available (according to him) are zolandex, the pill/injections and then have a baby so that I could have a hysterectomy. However, he also said that I probably wouldn't be able to conceive so hysterectomy might be the best treatment. What else is there available from your experience?

    Has anyone else had the experience of endo coming back after coming off zolandex?

    Thank you again for your help and understanding

    xx

  • hey...bless you ..u aint alone everyone on here goes through all or bits of it...wen i have a bad i come here..lol..why are you not on opiates any more??/xxx

  • Because they impacted my colon so I can't take them. Thank you for you're words of encouragement;I can see why this forum helps so many people. Amazing how no one else understands xx

  • I cant take opiates too, due to very bad side effects, but with heat pads and being 100% gluten free and following the endo diet, i managed not to need painkillers most of the days.

    you should look into the endo diet, its based on elimination of wheat/gluten, red meat, sugar, caffeine, dairy etc. It seems too strict but if you take out of your diet one thing at a time, it can happen and it helps so much the majority of women with endo. Not needing painkillers and have energy and clear head (without opiates) its a good thing! xx

    endo-resolved.com/diet.html

  • Hi Lucy, I am so sorry you are going through it at the moment

    When did you have your Zoladex injection? It takes a while to kick in, so if it was a month ago it could be that it just needs time. Last time you had it you'd also had a lap and a bit of a clean out; it was probably that as much as the Zoladex which gave you relief then.

    I think you need to get a second opinion from another gynae. The recommended time limit for Zoladex is 6 months, but at your age and as long as they monitor you, you could have it for longer. And anyway, once you've had a break you can go back on to it; I went through a phase of having six months on and six months off.

    Also, Jo said, a hysterectomy won't help unless your endo is limited to your womb. Don't even think about that if you are wanting a family.

    One final thing...presumably now your colon impaction has sorted itself out, if opiate based medication works for you there must be a way you can take it along with laxatives so that doesn't happen again. GPs are reluctant to prescribe opiates but there is evidence coming through that they are the best way to go for endo pain. I understand that they have to exercise caution and can't dole such strong drugs out willy-nilly, but it really hacks me off that people in real pain are treated with suspicion because of the generalisation that Opiates Are Bad

    Good luck

    C xxx

  • How long have you had endo for Chrissie? You're so knowledgeable! How long should I leave it before I go back to the doctor and tell them that the Zolandex isn't working? Xx

  • Ha! I don't know about that, but I have 21 years of experience since I was diagnosed. Plus probably 10 years before that. Fun! (not).

    The Zoladex takes at least a month to get going properly, and often another month after that so you probably need to give it a little bit more time.

    It's all trial and error because we're all different. The endo diet doesn't work for me but I know lots of ladies swear by it, so give it a go :)

    C xxx

  • It's funny you say that because i've just asked my partner if we can do this. I'm also going to try amiltriptline and pregablin (not sure that's how they're spelt) any good? Xx

  • I've tried pragabalin and gabapentin (similar) didnt work for me, horrible side effects. BUT they worked so good for other women so you should give them a try. :)

    But I insist for the endo diet, if you can avoid chemical in your body by changing you diet, would you still prefer tablets?! ;) xx

  • I'll do anything to ease the pain. I've never experienced something where I feel so desperate xx

  • Hi there, I am afraid I don't have advice, but I did want to send some big hugs and support.

  • Thank you so much. I just wish it would go away Xx

  • Have you tried acupuncture? My dr has suggested I look into it and I have a friend who seems to think it helps so might be worth a try. Big hugs and hope you find something that works for u soon xx

  • Hi, the first time I went on to zoladex my consultant recommended a 6 month course but my endo came back so I went back on to Zoladex for a second time and my consultant said as long as I was taking HRT she had no problem with me staying on it for a long as I wanted. I stayed on it for over two years and came off it by my own choice. I did help a lot with the pain whilst I was taking it so it may be something for you to consider and discuss if it helped you during the six months you were on it. Take care. x

  • Big Hugs, you definately not alone. We are all here to help you through.

    I cannot recommend enough getting a tens machine. They are relatively expensive at £60 cheapest ive found, but last forever and has helped me sooooooo much to point I didn't really need opiates or when I did I could just turn the tens machine up.

    Family and friends of yours probably feel helpless seeing you in so much pain and if they all knew they could help by giving a little towards helping im sure they would or i think you can hire them or have them lent by pain clinics.

    I'm a nurse who works on a surgical ward and I care for patients with severe impaction needing surgery. Whilst its not good to repeatedly become impacted, its makes your bowel baggy excerbating the problem, slows digestions and metabolism which also won't help symptoms of endo, your pain has to come first. There are many laxatives on the market. Often you need to treat constipation from the top with tablets and bottom with enemas or suppositries

    Also with opiates, depending on which ones you have tried, you need to start of the lowest dose possible and buil up rather than taking the standard adult dose. Eg you may find codiene 30mg doesn't take away all your pain alongside other painkillers, but it may take the edge of enough and not lead to severe constipation of 60mg dose. Or you could just take it twice a day rather than four. You must take paracetamol and non steroidal xrug alongside it regularly to keep the levels topped up in your blood even if its not seeming to help and some women find it helpful to start taking the non steroidal (ibuprofen/diclofenac/naproxen) 3 days before their cycle starts as it takes time to work against the pain signals.

    I definately agree with heat bags, I couldn't he without them and am just about to try the diet too after advice from this site. First will try wheat free.

    Ask for referral to pain clinic and definately don't think your Dr knows everything always do your research if you have doubts or not happy, you don't have to say yes as scary as that may seem.

    Good Luck xxx

  • lots of good advise info here..I also recommend going to a qualified herbalist ( I go to Napiers)as I was given a mix which really helps with symptoms and cleansing body. Alos advised by her on diet..fish oils,wholegrain, no caffeine avoid oestrogen in meat etc..but think you have to be careful about cutting out all carbs as need energy to combat stressd) and not everyone s affected by gluten . I am also a nurse but it took a while to get decent GP and diagnosis(stage 4 before i did). I can't tolerate the strong hormones so on progesterone (low dose ) which has helped so far. Getting fit good. I can;t tolerate hot water bottles. Everyone is different! Need to get good consultant,,i kicked up a fuss until i did nobody who could help. Come to this site recently. I take tramadol in low dose at night and cocodamol. Yes..try lower doses at first till body can metabolise.

    Wonder if any of you are working as my problem is stress beings on symptoms and I now work in Social Work!! I get mood swings with the hormones but need to keep working!

    JJ

  • I know i've said this already but i'm just bowled over by the kindness of people that have commented; thank you. Tried the hot water bottles and diet and going to try tens machine if I can find one.does anyone else find that their symptoms get worse as the day goes on? X

  • I agree with others, find an endo specialist gyne, good Gp and try different things/therapies and pain relief combinations (but check with gp or pharmicist as some pain meds dont mix)! I feel for you, I too have problems with appalling constipation/piles/fissures and my colon gets impacted too often. I have learn't, it is vital that if you use condeine in any form you should use a stool softener alongside, lots of water etc. I sometimes have to use Fybogel with Merbervine plus Lactalose (which can bloat you a bit and be a bit gassy) but it keeps things moving. If I am really blocked I even throw in the occasional Senna tab and drink loads of water plus eat prunes or drink prune juice and spinach is good. I find if you use Codeine you need to reduce bread consumption as bread swells in your gut and the combination helps clog you up! I find Codeine takes the edge off but I can't say it kills the pain. My Gp suggested taking Paracetamol between doses of Codeine (at least 4 hours apart), whilst another GP I saw said try Ibruprofen 400 mg but it is not advisable apparently to take Ibuprofen long term due to risk of stomach ulcers. I haven't yet tried Tramadol but have some as I was worried it might affect my driving but maybe one day I will. Of course every body is different and no one person is the same, so what works for one, may not for another.

    With medical advice, I would say try a few different things and hopefully one will prove to work better than others. I also have Diverculitis and small Hiatus Hernia along with history of extensive endo and adhesions (my main problem now), this really complicates things as I have to constantly battle with pain meds and if I get it wrong which I sometimes do, I get horrendously constipated.

    One said take Ibuprofen another GP said don't. If I have a bad night which I often do, I'll change course the next night and try either one pain med that night and another the next and jiggle my diet that day. Mindful Meditation CD's can help refocus from pain signals if done before bed.

    There is no magic bullet with these conditions! You have to see what works best for you and importantly get a good endo specialist gyne and a Gp with good understanding of endo and associated problems. Lastly, I have tried taking half an Amitryptaline with half a Zopiclone sleep pill which although doesn't stop pain breaking through, for me, does allow me an extra hours sleep. Has anyone else tried this and does it help for you?

  • Hi Juleyanne, thank you for your comment.I've been prescribed amiltryptaline which might help. Thank you for your advice about bowls, it's lovely to know someone goes through the same thing. I found that flax seed is a life saver. Sprinkle two tablespoons of it on cereal or any food. Does anyone else feel like endo ruins their relationship because sex is impossible? X

  • Had years of pain, cysts endo, no periods, 3 month periods, blocked tubes,etc etc etc tried every treatment (hormones, ops, excisions, Pain meds of increasing strength, coil etc etc

    Last summer ended up with bladder incontinence and unbearable pain after 3rd a&e visit, MRI scan paid for by myself but ended up with emergency op....n guess what....advanced stage 4 endo adhesions stuck on all internal organs and full hysterectomy only real option....

    So I had it and haven't looked back. No pain. Am 40, haven't been able to have a child but my quality of life was so poor that I had to take this step. I now have a life, energy, and look forward to every day.

    This operation has changed my life and just wanted to say that although deep down I had wanted a family, I accepted years ago that this probably wouldn't happen.

    Hold out and don't have a hysterectomy unless you absolutely have to but if you do have one there are many positives too. Seek second and third opinions and research fertility experts.

    I wish you all the best. X

  • Had years of pain, cysts endo, no periods, 3 month periods, blocked tubes,etc etc etc tried every treatment (hormones, ops, excisions, Pain meds of increasing strength, coil etc etc

    Last summer ended up with bladder incontinence and unbearable pain after 3rd a&e visit, MRI scan paid for by myself but ended up with emergency op....n guess what....advanced stage 4 endo adhesions stuck on all internal organs and full hysterectomy only real option....

    So I had it and haven't looked back. No pain. Am 40, haven't been able to have a child but my quality of life was so poor that I had to take this step. I now have a life, energy, and look forward to every day.

    This operation has changed my life and just wanted to say that although deep down I had wanted a family, I accepted years ago that this probably wouldn't happen.

    Hold out and don't have a hysterectomy unless you absolutely have to but if you do have one there are many positives too. Seek second and third opinions and research fertility experts.

    I wish you all the best. X

  • ....also, try staggering your painkillers, such as Paracetomol, then two hours later your anti inflamatory, then two hours later you are able to take Paracetomol again, and so on ...

    This way you aren't letting the doses get low at the same time and allowing the pain to kick back in. Set an alarm if you have to. I take my meds at

    6am Cocodamol and Buscopan (four times a day)

    9am Tramadol (twice a day)

    12am Cocodamol and Buscopan

    3pm Voltarol Suppository (faster acting) (once a day, they last 24 hrs.)

    6pm Cocodamol and Buscopan

    9pm Tramadol

    12pm Cocodamol and Buscopan

    Oramorph when needed (every four hours no more than 4 doses in 24 hours)

    It sometimes drives me mad that my alarm is always going off, especially in the night, but, if it helps to keep the strong pain at bay, it can only be a good thing.

    Also, for when you are up and about and can't use a hot water bottle/heat cushion, try the heat pads that you shake to activate and stick in the back of your underwear, they last upto 8 hours and can be found cheaply in Supermarkets as well as Pharmacies.

    Take good care, and keep warm xxx

  • I have a terror of hysterectomy. For those who have gone this route, is it ridiculously painful and how long after the op generally does the worst of the pain ease? I have had loads of ops but heard such awful things about hysterectomy ie blood transfusions, bowel ressection, months of incapacity.

    I really want to hear the truth, is it that bad? My last op lap and hysteroscopy where loads of endo and adhesions found was ecruciatingly painful and I was kept in for days after in what should have been day surgery. I think I am traumatized from that and have developed a phobia that it will be agony and might not work.

  • Had hysterectomy, total one, due to many symptoms and years of pain....haven't looked back. I had general and spinal anaesthetic...woke up from op and no pain....was uncomfortable when in car for a while after and trying to sit from laying down wasn't easy BUT took pain meds for about 4 days....post op pain was nothing compared to endo/cyst/fibroid/adenomyosis. I thoroughly recommend it as my quality of life is 100% better.

    Everyone is different I'm sure but was the best choice and outcome for me.

    All the best juleyanne, on whatever you decide to do.

    X

  • Thank you so much for the comments, it's really nice to hear peoples stories. Did.anyone bleed on Zolandex?

    I'm not sure I could have coped in these last two Weeks without this sort of support so thank you x

  • Hi I have really fought to get a doctor to listen to me, i was 40 I have a back op in 09, then a spinal infection. Since then I have had really bad back ache they all said it was my back problems but I knew it was a different kind a pain. The doctors just kept on giving me morphine it got to the stage that I was just sleeping all day and couldn't talk. I start to get heavy bleeding and clots between periods. One day I was rushed into hospital 999 call with pains in my tummy. I was they 16 days saw gyns and other doctors scans etc nothing wrong carry on with your morphine also have some oral morphine lolx I went straight to my doctors to ask to be sent to kings mill hospital for a second opinion. 2weeks later I went got fibroids had a lap in next week got server endometriosis as well booked in the week after for the bikini cut op. might have to have a colostomy bag . Woke up after the op doctor sat at the side cut me open to bad to do bikini way so need another op in a few weeks. Day came they cut me upwards had a full hysterectomy and my bowels all scrapped. I feel so much better. No promise it won't come back but FIGHT FOR ANSWERS DON't let ours get that bad you have to have a full hysterectomy !!!!!!!!!!!

  • hang on in there with the injections mine didnt work until after the 4th one im one week post op following total abdo nysterectomy and feel amazing post op pain nothing in comparison to endo pain hope this helps also i had butrans patch which helped settle some of endo pain

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