Hi there I was just looking to chat with some people who have experienced or are experiencing any sumptoms similar to myself. Since being diagnosed over a year ago not much has happened I am still awaiting a follow up appointment with gynae! Since then my medication had been stepped up and I am now taking morphine tablets on a regular basis and anti depressants also. I am finding it really difficult at the moment I have went from a care free young girl of 21 to depressed , I don't go out anymore because of the oain and find myself upset almost everyday! I am also constantly worried about having a baby now and manage to convince myself every month I am pregnant when I'm not. I was just wondering Id anyone could offer any advice or even just a chat with someone similar would be extremely helpful.
Haleyxxx
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Haleymyles93
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Sorry to hear you are feeling this way, I can assure you that you are not alone, I feel this way a lot, I used to be out all the time, exercising daily and loving life, now I literally just go to work, come home and I'm exhausted, I haven't exercised from October and I do feel down a lot, it's hard to get through the pain some days and no one really understands what's going on even if they do try to!
If you ever need a chat, just message me, there are so many lovely ladies on this site who will be happy to chat, I always find it comforting to come on and know I'm not on my own! xx
Thank you IT definitely is comforting I am really struggling at the moment and the doctors won't listen I had a Hosp appointment yesterday which was changed to earlier and nobody notified ME so I never got to see the consultant and when I phoned Im through as a new patient when I have been plenty of times!! So frustrated.
My appointment was may but have been moved to September as much as my gp has wrote to gynaecology asking for me to be seen quicker they have said that no had any word from my gp which is quite frustration like xx
They had me down as missing several appointments also which is untrue! I was referred to the infertility clinic but me and my GP decided that IT would be best for me o see gynae again first due to the amount of pain I have been in. X
Iv been seen by infertility and nothing much that they can't do much so doctor wants me seen by gynaecology cause only people that can do anything now giving the pain I'm in see them in September so fingers crossed hope it all works out for u to xx
I'm the exact same I got diagnosed last year and had a lap but the pain has gotten worse and I've also been put on anti depressants.. I found life in general extremely hard and I was constantly crying.. I'm only 22 and I have noticed a big change in my attitude and I've kind of distanced myself from everyone because they don't know or understand what I'm going through and I am always tired. When I'm in pain all I want to do is sleep. So believe me your not alone in any of this.
I was dignoised with aheasions in Jan and surgeon told me that a little bit of endo was found but still fighting a vicious circle as still suffering in pain and ended up in hospital in may doctors still think that my endometriosis might have came back as was lucky enough to have a beautiful son but all the bother started after I had him and everyday is a struggle with working if u ever need to talk I'm here don't need to go through this on your own sending hugs your way xx
Thank for your kind words it's good to know people are there to support! The only "good" thing is that I am a pharmacist so i know all about meds and what I can try and sometimes the GP listens to me!
Others if that makes sense? Yeah I ised to play basketball for scotland went to the gym nearly everyday it's now all stopped and IVE gained about 2 stone! I just don't feel confident or comfortable in myself anymore. All I do is sleep and when I'm awake my fiancé gets stick from me and I really can't help it.
I'm in the exact same position as you. I'm 19, I used to be on morphine tablets I'm now on morphine patches which give out 5mg per hour. I am also on duloxitine,amitryptiline and Evra patches.
I also don't go out I don't leave my house and most of the time im in my bed in pain. I feel like the doctors don't take me seriously because of my age. I just get thrown pain meds and told it will go.
I also,despite being told I can't have children, convinced myself I was pregnant which ended up being a hotm imbalance.
I think the only advice I could give you is to remember you're not by yourself in this. Make sure you have support behind you.
Thanks for getting back to me I have been gojng to my GP since I was 14 with pain and was told it was in my head there was nothig wrong! I convince muself Im pregnant every month and I get so excited! It's got to the point my fiance is thinking about giving up on having a baby becasue of how upset he sees me! I thought after diagnosis I would get help but so far nothing xx
So sorry to hear you're going through all this. I was diagnosed at 24 and remember how vulnerable and shocked I felt. It's so difficult to be diagnosed in your 20s and suffer serious issues with pain, it can be so isolating at a time when you're meant to be having fun!
Firstly with your review appointment, a year is really too long, there are two things you can do easily to try and find out what is happening. Number one, make an appointment with your gp, tell them how bad your pain is and ask them to chase up things with gynae. Either they can send a letter to your hospital consultant asking for you to be seen urgently or if gynae have discharged you (which may be the case) they can send a referral letter to get you seen by an endo specialist. The care you receive from a specialist is far better. Here is a list of endo centres in the uk -
The second thing you can do is phone the switchboard of the hospital you were treated at and ask to be put through to your doctor's secretary. Again tell them what is going on and that you need an appointment - they can look up your record and find out what is going on. If you have been discharged it is back to the gp (see advice above).
If you haven't had a laparoscopy or laparotomy before or it has been six months to a year after surgery you really might need one again. The waiting lists can be quite lengthy, but the good news is that it could reduce your pain dramatically and also will get your body into the best shape to allow you to conceive. Your doc may also suggest something like prostap injections or going on the pill back to back for six months to try and get symptoms under control and reduce endo growth. Also if you're on pain meds and anti-depressants this really isn't good for conception or the development of a baby so you'd really need to speak to your gp urgently re. any plans to conceive and the meds you're on. Even certain anti-biotics are dangerous so it really is important. The gp will try and get you onto the best combination to give the least risk of harm to a baby, whilst maintaining your care. Personally I've had to cut back to paracetamol and although I had massive withdrawal I've actually found that a lot of my pain was actually being caused by pain meds (in particular tramadol) which were messing up my bowel. The pain can be worse for me now, however it isn't as frequent and prolonged so I'm actually able to do more - also I'm mentally a lot brighter and 'on the planet' which is doing me a lot of good!! Here is a leaflet my gp gave me in order to prepare my body for pregnancy.
I remember feeling totally traumatised when I was initally diagnosed in 2010. I really wasn't ready for a family at all and neither was my partner. Now we're in a good financial position, have our own house and got married last year. I really would have struggled earlier so I don't regret waiting now as I know we're ready to be parents. Conversely I watched my cousin, who was was also diagnosed at a similar age (though has never had a lap), go into blind panic to fall into any old relationship because she was desperate to get pregnant. Within a few months of the baby being born she moved across the country with her partner to move in with her parents. Then the relationship with the father broke down. Now she is a single mum and her parents are still taking a large part in the care of her daughter who unfortunately has developmental problems as her early life was so chaotic. The whole thing was a mess. I'm not saying if you have a baby so young this would happen to you, there are so many amazing young mums. All I'm saying is don't feel the doctors can rule your life. If you have endo that's a fact and whilst it might be a bad idea to wait until you're 40, you are so young that if you need time to look after yourself and get into a good place/stable relationship that is ok.
It sounds like you really need some proper support from your gp and hospital consultant, so I hope you get that sorted out. You could also benefit from some counselling (possibly from a medical psychologist with experience helping people with chronic illness) that would help you to come to terms with having endo and manage things better. I'm starting acupuncture soon and thinking about yoga to manage stress.
There are lots of things you can do yourself to manage endo like diet etc. which can empower you to take control of whats happening to you.
And obviously endo uk has lots of resources and a helpline, I remember contacting them in the beginning and the lady I spoke to knew so much and was really helpful.
Best of luck to you, everything will be ok and you will get some pain free days, you just have to keep going. xxx
p.s. have just read through the rest of the thread and seen you're obvs in a stable relationship and a pharmacist so would know all about the drugs and pregnancy! I don't really get why they would refer you to the fertility clinic - unless you've already had a lap and been trying 6-12 months. If so that is great and bodes well as you'd be on the waiting list for tests/treatment quicker. I've read a few papers online saying there's something like a 66% chance of ivf being successful with endo patients under 35. Also I would bear in mind I was told I would need ivf at 27 and we'd little chance of conceiving naturally. We came off the pill a few months ago (now 30) got pregnant first time - unfortunately had an early miscarriage but we're really hopeful that next time things will be ok and I'll carry full term.
Here are some tips that may have helped us - followed the nhs advice, used 'my days' app to track ovulation and when we should be trying. If you climax first the cervical mucus is thinner and more conducive to sperm. And lie down with your hips raised for about 20 mins post sex. You probably know all that anyway, but anything is worth a shot. I also dropped 3 stone using weight watchers app (didn't fancy the meetings).
Thanks very much this info is a great help!! We have been trying for over a year now and it's got to the point Im in too much pain to even try! With my meds I only take the morphine when it's unbearable and like yourself just try stick to paracetamol. Im sorry to hear what's happened to you I hope everything falls into place for you and you get a family!
I know how you feel, very sore after and difficultly walking!! (how embarrassing eh!)
We only had sex a few times in the month we conceived due to pain so I'd say timing is key. As is taking care of yourself and relaxing - your time will come. I know how frustrating it is, try not to let it take over xx
Im definitely going to try call te secretary my GP is trying her best but even she can't make any progress! I was diagnosed by "accident" hosp thought i had appendicitis so I went under to get my appendix removed was woken up to you have Endo see your GP and you had an infection in your Fallopian tubes that's why you had a temp! They tried the pill but not an ounce of difference! Have you heard of any healing massages being helpful? I think wills try yoga too I need to try get rid of some stress xxxx
I've definitely found going through the secretary quite effective in getting things moving. Sounds like you had quite the shock when you found out. If it was a general surgeon looking at you then they won't have done any excision surgery to get rid of the endo. So it would definitely be worthwhile getting to see a gynae endo specialist who can treat you. They tidy you up to alleviate pain and aid conception. If you get on the waiting list for the lap you can still try in the meantime and you only have to quit trying for a few months when recovering so it's well worth it.
I know waiting around on the docs when you need help now is really tough. I'm due for op no. 5 next summer, for two of my surgeries things were more complicated than anticipated so they just had to close me up after doing very little. It's a bit like what happened with you.
I've heard of the mama mio massages to aid conception, though they're supposed to be expensive. I'm being sent for 6 regular massages by the nhs to help with pain/stress -quite amazed at this! Acupuncturist I'm seeing tomorrow has a lot of experience with gynae pain/fertility issues. A good friend has been popping pills for years for endo and acupuncture has got her off all meds so I have high hopes.
Do whatever you need to do to take care of you and be happy and well, destress as much as you can xx
I really do. I just need to get to a pc so I can type quicker about everything. I've felt very alone and not quite finding someone with really similar circumstances and I do think we may have similar problem.
looking forward to writing you a proper reply! Speak soon xx
Being pregnant can make endo easier but the only problem you have is symptoms come back once you have a baby which is what happened with me but please don't give up hope of having a family as you can still fall pregnant with endo depending on how bad it is the gynaecology wanted to put me on zoladex injections but I refused cause want another baby so unfortunately my treatment options is painkillers and sometimes don't help on a really bad day xx
Thanks yeah I'm finding even the morphie doesjt help on bad days we have been trying for over a year now im getting tithe point of giving up on having a family we even got a puppy coz I thought enough is enough
When do u see gynaecology cause I think they should be doing more have you been offered ivf I got told by infertility that I could get ivf but wouldn't be funded on the nhs as I have one child I know that couples who don't have children get two cycles on the nhs but been told that the waiting list is about two years hunni xx
I went to the gynae appointment who said it had been changed but nobody told me!! So I now need to wait AGAIN! It's really set my mood back. Thanks for letting me know the waiting times it's such a long time 😞 xxx
Hi Haley, you are definitely not alone. I've only only just been diagnosed last week after a four and a half year battle with GPs and the hospital, and I feel the same as you. Never want to go out, do anything, constantly teary, and this was not me 4 years ago. My family and boyfriend bear the brunt, I have convinced myself that I will never have children, which I don't know for definite, but I don't seem to see any positives about this condition. X
It's so sad so many woman go unheard suffering in silence! I have convinced myself I won't have any we went and got a puppy on February she's my baby for the time xxx
I can't find any positives either Its such a debilitating disease and hardly anyone knows about it! It's definitely needing more awareness raised! I did a 44 mile cycle for Endometriosis UK charity it killed me but I felt great after raising funds xxx
Hi there I haven't read all the replies so somebody may have already told you this. I empathise completely with what you are going through. I was told in December (5 days before my 23rd birthday) that if we wanted children to hurry up about it and 25 would likely be too late. This was destroying for me. Children aRe a massive massdive thing to me so important but I didn't feel ready. It was all I could think off. We decided in March to come off contraception and see what happened, but after lengthy zoladex courses and all the drugs I had been pumped with I didn't expect Much. Thankfully and maybe miraculously we fell pregnant in April and are now expecting a little girl they said I would be unlikely to get pregnant but we did really fastm it's not always doom and gloom. Please chase up your gynae follow up appointment. Insist on a long term plan not just something that's good for right now. I ended up reducing my painkillers right down and trying to use heat bags and tens to reduce the pain. Tens worked amazingly for me. Good luck and try not to feel too hopeless like I did things will always be right in the end xxxx
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yeah I'm finding even the morphie doesjt help on bad days 
we have been trying for over a year now im getting tithe point of giving up on having a family we even got a puppy coz I thought enough is enough 
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