I'm new to this, but I have been diagnosed with suspected endometriosis....Until I receive surgery we don't know what stage it is currently at. However it feels as though its getting worse.
My periods are irregular now, have been for the past 7months and counting. I have had regular periods before but this pain has been going on for 4 years and I've had all sorts of cameras, blood tests etc. Everything comes back normal. The only thing left to try is key hole surgery.
However I have been on the waiting list for a year and the pain is excruciating, it's every day now and the pain is so bad that it makes me physically be sick at times.
I've been told I need to wait 80 weeks due to covid for surgery. I have been back and forth with surgeons, doctors and nurses to keep being told I'm not a "severity case". I'm in pain every single day and it feels like its spreading further onto my bowels.
I really just want your advice ladies.....I honestly don't know if I can wait this long due to covid. I have tried Fybogel, contraceptive pill, ibuprofen, paracetamol and I am currently on Dihydrocodeine as well.
Any advice would be hugely appreciated as this is taking its toll on my relationship, work, family, friends and my mental health now too.
Thank you for taking the time to read this.
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The NHS waiting times are so long at the moment - it's awful, but understandable given the current strain being put on them. Unfortunately, there's not a lot that can be done about waiting times, unless you're in a position to go private.
I've recently had my 2nd lap done privately, followed by a hysterectomy 3 months later and the only reason it took 3 months is because I needed support to look after my little boy so chose around when my husband was available.
I am one of the Endo UK health unlocked moderators. I am sorry to hear you are having such an awful time, I fully appreciate living with endo can be extremely challenging. Endo UK offer information and services, including local support groups which can be an amazing resource, sometimes just knowing you are not alone and speaking to others in a similar situation can help. They also have a help line (link below). I am so sorry you are having to wait so long for a diagnosis, it is frustrating whilst you are living in pain every day. I have added some links below on diagnosis, treatment, and endo of the bowel. Keeping a pain and symptoms diary can be a good tool to take to your health professional and show them how severe your condition is. It can also potentially identify any patterns or trigger in your condition, it’s how I found I had food intolerances which aggravated my symptoms. Other thing that can help day to day are hot water bottles, rest, warm baths, and being kind to yourself. Have you spoken to your GP about getting some treatment whilst you wait on your gynae appointment? Sometimes they can offer things like hormone treatments, it might be worth looking through the treatments options and taking it to the GP. It’s not ideal but we often have to be our own advocates for endo. I really hope you get some kind of relief soon; in the meantime the support community is here for you.
It’s very difficult when it’s every day. Tell your GP you need an urgent pain clinic referral due to constant pain in the meantime. Don’t ask, too easy to say no. Use the econsult for anything as it’s in writing and can’t be ignored. Even if it’s to say your in pain.
Christmas Eve I was told by GP surgery to go to A&E if it got worse, as they weren’t helping I went. They gave Morphine slow release one twice a day. I was desperate because of the pain and no respite.
To backtrack last year the pain nurse said Tramadol was better for Endo than codeine based meds. You could suggest this if the others aren’t working. A non opiate option is Nefopam, GP’s are reluctant as it’s more expensive, tough as far as I’m concerned.
If it’s suddenly got worse and you haven’t had a urine check for infection, get this tested. So important to rule out.
Another one I use is Diclofenac suppositories, taking NSAIDS through the stomach doesn’t always agree and you may need something like omeprazole with it. Naproxen is a stronger form of Ibuprofen.
Everyday pain is severity, if a doctor is telling you it isn’t they don’t have a clue. I use a pain app to record things. If you want to try other meds go armed with info. I’ve found a lovely document that although based for cancer, it explains more about pain and if the pain is there a person is less likely to become addicted.
You know your body and what levels you can cope with. Animals get better treatment than we do half the time. I said last week I’d do better going to the vet 😂
At present I’m on paracetamol, Diclofenac when needed, Oramorph when needed, Amitriptyline and Pregabalin for possible nerve damage and Morphine slow release. I still get pain, more manageable than last week.
Hey just seen your reply, I asked my doctor to refer me to a pain clinic and they said no as it’s only for people with illnesses that can’t be cured and as I’m expected to have surgery (for a 5th time I should add) they won’t refer me. Assuming you got a referral via your GP?I’m on tramadol and naproxen and my old GP before I moved house would prescribe me morphine for break through pain but my new GP won’t give it me.. what can I do? I struggle so much with constant pain but the doctors just don’t listen and honestly make me feel like I’m a drug addict trying to score more. My surgeon has put me back on Prostap whilst I wait for a surgery date so I’m hoping that will bring some pain relief.
Oh wow, that’s ridiculous and they are lying (please do show them this) the disease is forever, they can never guarantee, it’s in the NHS top twenty of most painful conditions (easy to find with a search) research shows the cells act like cancer cells, you deserve to be treated with dignity and it’s really painful. Of course the pain clinic would accept, GP is just worried about their budget. The consultant can also refer you, give sec a call and ask them to pass the request on. It’s why they have a pain consultant listed on BSGE team information because it’s recognised as such. See a different GP, can be same surgery, there should be one with an inkling about womens health, and tell the surgery you’ll report the other one for leaving you in pain where they wouldn’t leave a pet in pain. There’s now going to be an MP for womens health, tell surgery you’ll let them and the CQC know. See how high they jump. 😂 they know from your records you’ve had it before, most professionals know that genuine pain on the whole won’t cause addiction.
I think high horse has finished 🤣
You don’t come across as an addict, don’t let them make you feel this way. 🙂
Do ask if specifics might help that I’ve done, PM if easier.
My surgery do hate me, but I’ve got things done in some ways because desperation leads you to take certain pathways including complaining at the highest levels.
Thank you so much for your advice, I’ve had endo since I was 16 (diagnosed at 22) I’m 35 and still in pain! I feel so let down by the doctors etc it’s been a constant struggle. Think I need to get tougher with this people and make them listen!! Thanks again! X
That is disgusting behaviour on behalf of your GP! I was actually told by the gynecology team I am registered with to request to see the Pain Clinic and they put it in writing to my GP to refer me so perhaps they might be able to nudge them? There is no cure for Endo just treatments. If your GP won't help with pain meds perhaps it is time to request a second opinion? The Pain Clinic do also have people who specialise in treating pain with medication, as well as other treatment options.
As for wait times I wouldn't hold your breath. I had an up to date scan in June and have just received a telephone appointment for January to discuss what it shows and next steps. I've been trying to get help for years with it getting worse and worse as time goes on. Sadly because the NHS don't view it as life threatening they don't priorise it for surgical treatment at the moment with Covid.
In case any of this helps you in respect of getting help:
I started with heat bags (I've tried several as well as hot water bottles and by far my favourite is flaxseed microwave heat bags that are sectioned off to keep the insides evenly distributed. I get mine via an Etsy seller and often use them multiple times a day), stretching and yoga, Physical Therapy that didn't help, body pillows ( to support me in odd positions to try and help), a tens machine (I have a standard two lead one from Lloyds Pharmacy so it can be used with two or four patches. I highly recommend taking the time to find the right spots for you as I find even shifting the pads as little as millimeters can go from no help to instant improvement. The same goes for the pattern mode and the intensity level.), music play lists (I have several made to choose from and listen to them in a dark room), distractions such as short timed games on my phone, I've tried several apps targeted at relaxation and found the Calm app works best for me, but there are loads out there and you may find you prefer a different one.
In respect of prescription medication, I went on to Naproxen then Mefenamic Acid. Had Tranexamic Acid added for bleeding regulation. Had tramadol added and then increased. Tried different forms or progesterone several times - it never helped with the pain and only led to misery and further suffering due to the side effects. Referred to the pain clinic. And then my GP added Gabapentin to my pain treatment. My pain is every day, but worse in the lead up to and during my period. Be warned that the medication I take means my concentration is impacted, it slows my reaction times, and also often makes me sleepy. I do not drive while taking heavy doses of pain medication. Even with all this, there are days all I can do is try not to go out of my mind with the pain. In this state I can not focus, carry on a conversation, eat due to stomach upset, or follow even a simple TV show. I've burned my skin with heat bags desperate for relief and I've used the tens machine so much I've had to get steroid creams to treat my skin, which no longer work. Each time I break down and use the tens machine now my skin becomes damaged from years of using it so much.
In the beginning I kept a diary of symptoms, when they were happening, and the severity of them, what I tried to help, and how it did or did not improve the pain. I shared this with my GP and I have recapped this along the way as my pain has gotten worse and my symptoms have changed (such as spreading of area of pain, pain levels, description of what the pain feels- for example, stabbing, scraping, burning, ect - the impact on my mobility and coordination and what I can/can't do as a result).
Long story short, I sympathise with you. It is awful. But you should not be left to suffer in the meantime. Worse case scenario , if you can not get support via your gynaecology team or a second GP opinion, you can try appealing to the management at the practice you are registered at and if that gets you no where you can appeal to PALS by filing a formal complaint. The wait times are long for this formal complaint process so they are unlikely to lead to a quick solution to your pain levels in the meantime.
It is possible if your GP doesn't have the information recorded of your pain and symptom journey, and what you have tried, that they do worry you are drug seeking. That doesn't mean they should ignore your pain. Endometriosis is one of the most painful things a person can experience and many doctors don't have the specialist knowledge or experience to realise this, especially if they don't deal with it regularly. Don't be afraid to be graphic and honest about your pain and how it impacts you. However,m as hard as it is, being respectful and avoiding aggressiveness or behaviour likely to put the doctor on the defense means they have no reason to accuse you of being in the wrong.
Thank you so much. I am going to call my gp and see about this pain clinic. I do feel as though I'm just being shrugged off at the moment.
I just need something to ease the pain, like you say its literally millimetres of a change if you move the heat pads etc. Unfortunately I'm a dog walker so my job involves a lot of walking and driving so I have to be very careful what I am taking on a daily basis. I tend to stay off my strong tablets until I get home.
I am also on mefamic acid and the one for heavy bleeding flows too. They do work but obviously only during the time of my period. Once my period has finally decided to leave the pain does get less, but its still unbearable for the majority of the day, but for at least a good 5 to 7 hours a day, I'm in agoney and it's normally in the evenings after a busy or stressful day walking.
It's not easy for us all and I really thank you for all your help and advice. I hope you get some answers and relief soon too. You are a very strong woman. 💪❤️ Xxx
Thank you. It’s made feel a lot better knowing I am within my right to request to be referred to a pain clinic. I need to learn to speak up for myself more and be my own voice. I understand how pressured the NHS is at the moment but this has been ongoing since I was 16 (im now 35). Thanks again x
Hey.. heat helps, get a good electric heat pad and warm baths. Pain meds and just trying to stay positive I know how hard that can be when stuck in this position, I’m on a long waiting list too and they’ve put me back on Prostap which nearly broke me last time (and my marriage). The most important thing to remember is to know your limits and don’t feel guilty when you need to rest and make sure you do. Give your body change to rest and heal. You could also try the inflammatory diet and maybe start a food diary to see what foods agree/disagree with you. For instance when I eat pizza I’m in agony the next day! Good luck hope you get some relief soon x
Thank you so much. Pizza is also a trigger for myself...It's always the nice things that don't agree, isn't it!? 😂
I'm so sorry you are in this situation too.
Like you say though, don't feel guilty for taking time out.
That's one thing I need to work on. I always feel awful when I see the dishes piling up and the washing too, but I'm literally in agoney and lying flat or scrunched up with a hot water bottle is my go to option, alongside the obvious tablets/painkillers too. Being on the go all day doesn't really help matters too as my job is very physical.
I hope you hear about a surgery date soon too.... 🙏 Endo has a lot to answer for. Xx
Thanks everyone for all your input/help/support and understanding.
I am already keeping note of what I am eating/taking medication wise and my pain scale levels daily too. (1 to 10, 10 being the worst, currently at 7)
I am always having baths and using heat sources. That seems to be the main thing that helps myself too.
I've also tried, nearly, but obviously not all of the medication above that you have all so kindly suggested and Tramadol seems to be the only thing that takes the sharp stabbing pain away on a daily basis. However I asked the doctor to prescribe me this and unfortunately due to the surgery being so small and yet again I'm not classed as unwell so to speak, they are very reluctant to put me on it for now, So I'm on this Dihydrocodeine... Which I'm told isnt as strong as Tramadol but should do the same job. I've only been prescribed this on Christmas eve. It's too early to tell but it doesn't touch the sides half as much as the Tramadol does. Like I say though it's still too early to write it off.
I've had my bowels checked, numerous urine samples handed in over the past 6 months, bloods done in the past year and the camera too.
All my GPS and specialist agree that its Endometriosis but until I receive surgery nothing can be confirmed for definite. However after doing my own research and knowing my own body, like we all do, I know within myself its Endometriosis, I'm just hoping it doesn't get any worse but judging on how I feel daily, never mind weekly, it certainly feels like it could possibly be spreading.
Going private would be great, but unfortunately being self employed for just 2 years and having Covid hit us all, hasn't helped matters.
Thank you all so much for your help, it's really lovely to know that I am not alone in this....Unfortunately I don't have many people to talk to so openly about this, Thank you to you all for your help. xx
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