Hello, I'm new to this page and looking for some advice. I was diagnosed with endometriosis at age 17 after being in NAND out of hospital with extreme stomach pains and fainting. The removed my appendix and realised that it was fine, so did a laparoscopy and found that I had endometriosis and removed the build up. I have been in and out of hospital with pain since and just given painkillers every time. Finally, last year I was taken into hospital and they wanted to do another laparoscopy, however the consultants argued as they said I was too underweight (I'm just a petite person who had always struggled with being underweight) and they decided not to do it because of the risks.
I've been on yasmine pill for just over a year which has seemed to reduce the pain. However I don't get periods apart from some occasional spotting. Until three weeks ago I had the most heavy and painful bleed of my life and was stuck in bed for over a week. My doctors dismissed it and gave my painkillers and methanamic acid. However I am still getting severe pains in my left ovary constantly and it is made worse by walking or trying to exercise (I was told exercise and walking would help).
I don't know what to do, I'm only 23 and worry about infertility and if I'm going to be in pain for the rest of my life. I just feel like I don't get taken seriously.
Written by
ClaireSpurdle
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Its a long a painful process when it comes to endo, Ive had it for 7 years now and it took drs 2 years before they actually did something about it, after 2 lots of surgery i find i cope alot better but when i get the pain i get the pain and as you know its horrendous, Ive demanded appointments from my gyne countless amout of times as i cant deal with the pain they have always been good with me and got me in, dont be pushed away keep going back until your happy, where do u have the endo, have they said anything about infertility? xxx
That was my problem, I was suffering for three years before they discovered it by accident when they were operating for an appendicitis. Since then I've been in And out of hospital for six years with them just giving me painkillers till the pain calms down and they change my pill every few years. My doctor said about possible infertility, however said that having a baby young might help, but having a baby at 23 just isn't an option for me. So I worry that when me and my partner are finally ready I will have lost my window.
Getting a gyne appointment where I live in Somerset is so difficult.
The pain has always been in my left ovaries and that's where they found the blood in my tubes, however the last three weeks since the heavy bleed is the worst pain I've ever felt from it. Xxx
Your GP should organise a scan to check there is nothing else (obvious) causing your severe ovary pain such as a cyst. Sometimes a cyst can form (without us knowing) and burst, which is extremely painful, but the pain usually subsides after a certain period of time so ongoing pain makes it less likely I guess.
The consultants you see, are they endometriosis specialists? If not then assuming the scan is clear, ask to be referred to see an endometriosis specialist. IME exercise and walking do not help if you have adhesions on the ovary (especially if the ovary is stuck to something and needs freeing) as the adhesions need to be removed.
If they need your weight up for surgery, is it possible you could be given some Fortisip drinks or similar to add into your daily diet? You could discuss this with your GP.
Thank you, I think I really need to push to see a specialist. I have seen gyne consultants, but never an endometriosis specialist.
That's what I was concerned about, I know that this isn't my usual pain and it's I'm such a specific place this time rather than in that area.
I've tried so many different drinks and supplements to get my weight up, I'm the heaviest I've ever been and yet I'm still seven and a half stone. I just can't seem to gain weight.
Re: weight - Other than your endometriosis/gynae problems do you feel well in yourself?
With severe ovary pain you could go to A & E - I've seen women on here go with severe pain and/or with suspected rupturing ovarian cyst. Just a thought! Otherwise GP should order one. You can actually ask - say that as the pain is different to normal and you've experienced the heavy bleeding could they at least rule out other gynaecological reasons for the pain via an ultrasound scan.
From a 'managing your endometriosis' perspective, a refererral to see an actual endonetriosis specialist (particularly at one of the endometriosis centres) would be a good idea. They usually try to get things under control and then will discharge the patient back to GP until it gets put of control again. Teir approach often involves laparoscopy, hormone treatment or a mixture of both.
I also have IBS irritable bowel syndrome which I have had for twelve years now following gastroenteritis. I am constantly tired and suffer with depression and anxiety, however have finished taking the antidepressants and cognitive behaviour therapy.
Yeah that's a good idea, the waiting list is so long where I live, So a&me is probably a good option. I have just booked a doctors Appintment for Monday and I'm going to really push for an ultrasound and then to be referred to a specialist. But if the pain gets worse over the next few days I will go to a&me
Do you have diarrhoea with your IBS? Wondering if you ever had a colonoscopy to check for causes (e.g. ulcerative colitis or Crohn's disease) of your inability to gain weight. Same for checking for celiac disease. Some of these additional diagnoses seem to crop up in endometriosis sufferers and vice versa.
I have noticed on the Thyroid UK forum (also on here) that there is the odd member that has this inability to gain weight with hypothyroidism (usually it's the opposite problem of unrelenting weight gain). I guess it has something to do with the body not processing nutrients/food properly due to a a lowered metabolism. Unfortunately getting thyroid problems diagnosed is often as bad as getting gynaecological problems sorted. You might find the Thyroid UK forum interesting. A lot of people with thyroid problems have comorbid anxiety or depression or in some cases get misdiagnosed with those problems (or even bi polar) when it's the thyroid problem, and once it's treated the mood disturbance stabilises!
No, my IBS is diet controlled so all okay on that front.
I went to see a doctor yesterday who did a quick feel if my tummy and found a lump which she said felt fibrous (I don't know what that even means) and requested an urgent ultrasound and gaene appointment.
The pain got a lot worse and I saw another doctor today as I can barely walk and keep getting dizzy and lower back pain and needing to wee all the time. He said my left ovary was very inflamed and he felt a mass. He did swabs and an internal and was very concerned, so called my local hospital for an ultrasound today and a gaene appointment urgently as he doesn't know what it is.
I'm really panicking as I've never felt pain like this and never had a lump or mass before. Is there a difference between a lump and a mass?
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