Long and never ending road....

[sarahrog20]

Hi there I'm New to this site. I searched for a forum as I'm at the end of my tether and struggle to cope with my endometriosis. I was diagnosed Feb of last year after fighting for a year and a half to get a lump removed and diagnosed turns out it was endometriosis. Upon the diagnosis I got wrote off like nothing was wrong and sent home to look it up myself and to get on with things. Since I have been backwards and forwards to the docs with fatigue, pain during intercourse and bleeding in between periods along with immense pain. I was referred back to a gyno after I found another lump in my cervix and had a scan which had shown up with a cyst. I went to see the Gyno who said that there was no cyst just me ovulating at the time and the lump was scar tissue which after reading my notes said it's likely to be endometriosis as it's peanut sized and growing. She advised to come off my pill and try for kids and if no luck to have ivf after 6 months and that was that. When I came off my pill about two weeks ago immediately I had pain that's lasted everyday the lump is sore and tender to touch and feels like a pressure inside and my ovaries feel like they are being burnt by hot irons. I know I'm not pregnant and its endometriosis symptoms but they are just worsening. I feel so alone with no hope I constantly feel like I'm robbed off due to being 24 and the doctors not having the knowledge on the condition round here. All I ever get told is your young your body will sort it out, you have time on your side, u even got offered a smear till they checked my age then said oh you can't your too young. I'm feeling depressed, tired, stressed and I just feel like I want the old me back it's never ending. I just want to have a child and get a hysterectomy as I haven't been advised any other pain management and can't see it getting better, I'm totally fed up. Desperate for support and help xx

[woolston27]

Hi

Have you had a laparoscopy? And seen a specialist about this hun? X

[sarahrog20]

No I can't find a specialist in my region and is a laparoscopy where they put the cameras in to see how severe it is? I was told about it the first time I seen a gyno but they said it was too invasive and then last time round they never offered me anything is this the best thing to ask for? X

[eew_notts]

Hello sweetheart,

Reading your story I am so angry on your behalf. I'm 23 and have had a fairly similar experience with some healthcare professional simply not taking me seriously. Are you currently under the care of a gynaecologist? It sounds to me that some action needs to be taken in terms of investigating the extent of your endo and then the decision can be made as to what can be done to help manage your pain levels (surgery etc). If you need referring to a gynaecologist you can ask your GP to do so, in your particular situation it is perfectly reasonable for you to do that. I find (being young and looking even younger) that I am quite often not taken seriously; in these situations I take my mum. I had a gynae appointment in Thursday, this particular chap has been very dismissive of me but I took my mum along and his whole attitude and behaviour changed. If it wasn't all so important it would have been hilarious.

Anyway, you need to get yourself to your GP/gynaecologist and bloody well tell them you want help. Explain that you feel no one is taking you seriously and that it is ruining your life. The NHS is a very busy, over worked organisation and sometimes if you want something doing you have to make a scene.

Please feel free to message me whenever if you want a chat.

E.

Ps - I find the best thing for pain is a microwaveable Wheatie pack. Xxx

[sarahrog20]

Thank you! The gyno discharged me so if I go to doctors and get referred to another hospital hopefully I might get somewhere. The hospital I chose I knew wouldn't be the best but my daughter is 5 with cerebral palsy and I thought with it being the hospital for her physio and it being close to home it would be easy to work round her but it has getting me no where. I have contemplated taking my mam but I didn't want to put on to anyone but I think it's the best idea thank you for reassuring me on that, I feel I don't ask for help when I should and I try to push it to the back of my mind but it's hard when your in agony everyday I think I live and breath my hot water bottle these days lol. I'm wondering if I should go back on my pill till I'm sorted just they can't do surgery if your pregnant and I'm feeling like it will be impossible to become pregnant with a lump growing there a just scares my what's happening inside and it may be time sensitive to have family. X

[MrsB1990]

Hey lovely... I feel for you I really do! I am only 24 myself and I am having an horrendous time too! I suffer with stage 4 endometriosis and have had to fight for over 4 years for a diagnosis! I was the same with the smears too untill I went the hospital and they done it there and it came back I had abnormal cells an I had to have them removed! I am in hospital so much due to being in pain I am on a high dose of painkillers but the one I find most effective is the diclofenac suppositories, they are amazing! Hope you get sorted soon! Xxx

[sarahrog20 in reply to MrsB1990]

Thank you could I ask how you found out what stage you are just I would like to know where I stand with it and how severe it is. Xx

[MrsB1990 in reply to sarahrog20]

Hey hun.... Well I had a lap in June and was told I only had a spot of it and it was really mild... I then got referred to an endometriosis specialist and seen him I received a copy of the letter he sent to my GP saying I had stage 4 endometriosis, severe deep endometriosis and he also thinks I have rectovaginal endometriosis. So its really my results of the lap and my symptoms how we found out! I am having a MRI scan on Monday to see how much they need to cut off my bowel and see if I can keep my bowel! I would really push for a lap! Your welcome to message me if ur feeling down and want a chat lovely xxx

[sarahrog20 in reply to MrsB1990]

Thank you that's really helpful. I hope things go well for you xx

[MrsB1990 in reply to sarahrog20]

Thanks hun hope u get sorted soon xx

[Tboag]

Hi, I'm 39 and still feel that no one is really listening to me, my last gyne doc didn't even mention endo, just that it could be my age, but nothing is wrong as nothing showed up on my ct or ultrasound scans, gave me a 6 month follow up appointment, I've now gone back to gp and been referred again to another gyne doc, got app on Tuesday, I'm requesting a laposcopy because I've struggled in the past with the pill, any way I think if it's there then get rid of it, keep pushing and don't give up, I've ignored my pains and put it down to other things for far to long,

Good luck, and chin up.

[sarahrog20 in reply to Tboag]

Thank you I'm the same I keep saying I will book that doctors appointment but then I always tell myself it will go away in the morning and it never does. Come Monday I will be straight to doctors to get the ball rolling I'm so happy I found this page. Everyone's so nice and helpful thank you all x