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Desperate, endometriosis symptoms but no help!
Hello all. I just thought I would pop a post on here as I feel I might have Endometriosis but I am having no luck with my GP actually helping me with my problem and I am hoping to receive some advice / support here. I have been suffering from irregular bleeding for quite some time - however - being on the injection (contraceptive) I understand this causes problems with periods. I find sex very painful at times and some positions are just a no go! I am now experiencing pain constantly in my lower stomach and lower back, especially if I have eaten a lot or if I need to go to the toilet
My husband has also commented that I seem quite depressed - (I haven't wanted to mention it - but I have been feeling very down and lathargic) which is very unlike me as I am a very outgoing and active person. I have also in the past three weeks had very bad hip pain - almost like siatica and this occurs when I have been sat down for about 15-30 minutes. I am a massage therapist so understand all my muscles and ligaments but the exercises I do for siatica don't seem to be helping. Just sitting writing this is causing me lots of pain in both hips and lower back.
I have been to the doctors with this problems 10 times in the past 4 months, my smear and STI checks came back negative..so they could rule them out. In January - I had a 5 week period, as my GP put it 'you were probably spotting' - unfortunately I was wearing tampons and pads for 5 weeks!! (Thats a lot of spotting to me!)
In April me and my husband had sex and afterwards I bled a few blood clots - about four - some were the size of a 5p coin, and one was about the size of a £2 coin. After this - for three days I was in constant pain in my lower stomach and ever since then I have had some sort of pain that is always lurking. It have bled after sex for about a year, but never had blood clots before this.
I went for a ultrasound yesterday at my local hospital - both external and internal. When she did the external ultrasound I was in a lot of pain - whether or not that was because I was close to bursting my bladder I am not sure but I found it hugely uncomfortable. When I had to go and empty my bladder for the internal I noticed I was bleeding...I mentioned this to the radiographer but she didn't say anything, I also found the internal quite painful but not as much as when I had my smear.
To cut a long story short - they found nothing - I broke down on the couch because all my tests are coming back negative - which is a good thing I know as I can obviously cross out ovarian cancer etc. But I am so frustrated that I am not getting any answers. I left the hospital crying my eyes out as I honestly thought I would get some sort of answer.
Can anyone here possibly advise me on what to do next as I know when I go to my GP and tell her they found nothing on my ultrasound scan she is probably going to say 'Some women just have to live with bleeding and pain' (she said that to me before which hugely irratated me - no woman or man should have to put up with this pain)
I thank-you in advance for your replies.
My husband has also commented that I seem quite depressed - (I haven't wanted to mention it - but I have been feeling very down and lathargic) which is very unlike me as I am a very outgoing and active person. I have also in the past three weeks had very bad hip pain - almost like siatica and this occurs when I have been sat down for about 15-30 minutes. I am a massage therapist so understand all my muscles and ligaments but the exercises I do for siatica don't seem to be helping. Just sitting writing this is causing me lots of pain in both hips and lower back.
I have been to the doctors with this problems 10 times in the past 4 months, my smear and STI checks came back negative..so they could rule them out. In January - I had a 5 week period, as my GP put it 'you were probably spotting' - unfortunately I was wearing tampons and pads for 5 weeks!! (Thats a lot of spotting to me!)
In April me and my husband had sex and afterwards I bled a few blood clots - about four - some were the size of a 5p coin, and one was about the size of a £2 coin. After this - for three days I was in constant pain in my lower stomach and ever since then I have had some sort of pain that is always lurking. It have bled after sex for about a year, but never had blood clots before this.
I went for a ultrasound yesterday at my local hospital - both external and internal. When she did the external ultrasound I was in a lot of pain - whether or not that was because I was close to bursting my bladder I am not sure but I found it hugely uncomfortable. When I had to go and empty my bladder for the internal I noticed I was bleeding...I mentioned this to the radiographer but she didn't say anything, I also found the internal quite painful but not as much as when I had my smear.
To cut a long story short - they found nothing - I broke down on the couch because all my tests are coming back negative - which is a good thing I know as I can obviously cross out ovarian cancer etc. But I am so frustrated that I am not getting any answers. I left the hospital crying my eyes out as I honestly thought I would get some sort of answer.
Can anyone here possibly advise me on what to do next as I know when I go to my GP and tell her they found nothing on my ultrasound scan she is probably going to say 'Some women just have to live with bleeding and pain' (she said that to me before which hugely irratated me - no woman or man should have to put up with this pain)
I thank-you in advance for your replies.
Thankyou Ticked. I have already been in touch with Dr Rutherford which is one of the ones on that list :-)
Here is her link. She knows a lot about the ins and outs of Doctors in the UK. Her social media name is Endostar. Also Endohappy on social media is great with this as well. They are my go to people when women in the UK need help :)
http://endostar.co.uk/endometriosis-specialists/
http://endostar.co.uk/endometriosis-specialists/
The UCLH takes NHS and I have a fellow UK Endosister who has a blog with what doctors take it that deal with Endo I will message you the link once I find it. You might need to travel but trust me the travel will be worth it in the long run.
Hi Ticked,
Many thanks for this information. A few people have said to me I could be suffering from IBs but I don't believe I have this.
Unfortunately all of these specialised GPs are private and not on the NHS - and their charges just for a consultation are hugely expensive and I just don't have the spare money to spend on this at the moment. It is something I am looking into though! My sister in law suffers from PCOS so she has been seen by one of these specialised when she was going through her diagnosis a few years ago.
Thank you ever so much for your support. It is much appreciated. I just want to know what is wrong with me - I am now starting to call it 'my little alien' as something is living in me and I don't know what it is!
xxx
Many thanks for this information. A few people have said to me I could be suffering from IBs but I don't believe I have this.
Unfortunately all of these specialised GPs are private and not on the NHS - and their charges just for a consultation are hugely expensive and I just don't have the spare money to spend on this at the moment. It is something I am looking into though! My sister in law suffers from PCOS so she has been seen by one of these specialised when she was going through her diagnosis a few years ago.
Thank you ever so much for your support. It is much appreciated. I just want to know what is wrong with me - I am now starting to call it 'my little alien' as something is living in me and I don't know what it is!
xxx
The problem is doctors still go along with the Sampson theory for starters which is over 100 yrs old and doctors still believe because of this theory that it is from back flow of blood which it is not, because then everyone would have it. They are irregular cells that is the difference and they don't know why some people have them or not but many studies have been done and they have been found in fetuses so it is now said that we are born with it. There is more research out there now because of strong women who have suffered from this disease. There are many doctors who have fought to help us but talking about anything gynaecological is still a bloody taboo.
I have explained this disease to so many people but honest to god as soon as I say vagina, uterus, painful sex or menstruation they turn away even women. It makes me utterly sick. It took me 14 yrs to be diagnosed and I was TEXTBOOK. I had all the symptoms. I blame also gastro doctors because they should be taught how to feel for rectovaginal disease and not just say its IBS. Many women diagnosed with this actually have Endo. However some people are just not symptomatic and that is also a problem.
You have people and doctors out there saying the word "cure" there is no cure. What we have is a gold standard for now to help treat the disease the best they can until more research is done on how to detect endo through blood test or urine but we are a long ways away for that. I have taken part in 3 different Endo studies. One for DNA and the other two just recently at my surgery. They took cells and fluid after pathology and are testing them for different cell factors etc. Not to mention people who claim "They had endo and now don't or that they had a baby and the Endo is gone. This is not just doctors its patients as well. So what you have is a disease that some people are symptomatic and some are not no matter what stage they are at. That becomes a huge problem because its like cancer the way it feeds off estrogen and if we died from this disease like people with cancer do then it would be highly recognised. Some people have died from this disease that is the problem and some commit suicide. It is so sad and I have been there because I felt so alone during this journey. Thanks to social media I have thousands of endosisters and I have learned to educate myself and not go by what the doctors here say. I have connections to top surgeons who I talk to as well as long standing advocate for this disease so I go to them with questions I can't answer.
My GP straight up said "I know nothing about Endometriosis" she is young she is female and that made me sick to know that she has gone through medical school and knows nothing about a disease that is hugely under diagnosed by millions of women.
You are lucky as there is a lot of research and help in the UK. I am going to find out which one is the best as one of the top UK Endo surgeons passed away this year but these are some options for now.
Mr. Ashwini Kumar Trehan
Elland Hospital*,
Elland Lane,
Elland,
West Yorkshire, HX5 9EB
T: 01422 324 000
Mr. Trehan's private website
*BSGE accredited endometriosis centre
Mr. Mohamed Soliman Abdel-Aty & Mr. Mark Willett
Lancashire Women's and New Born Endometriosis Centre,
Burnley General Hospital,
Casterton Avenue, BB10 2PQ
T: 01282 804 271
Mr. Kevin Phillips & Ms. Jane Allen
Castle Hill Hospital Endometriosis Centre,
Castle Road,
Cottingham, HU16 5JQ
T: 01482 624259
These are the three closest to you. I know in the UK you guys have NHS or something like that not sure if these doctors accept that but there is a hospital/place called UCLH Endometriosis centre that many women in the UK go to. You can also look on this link as well (not sure it will post a link, if it doesn't I will message you.
http://www.bsge.org.uk/ec-BSGE-accredited-centres.php
I have explained this disease to so many people but honest to god as soon as I say vagina, uterus, painful sex or menstruation they turn away even women. It makes me utterly sick. It took me 14 yrs to be diagnosed and I was TEXTBOOK. I had all the symptoms. I blame also gastro doctors because they should be taught how to feel for rectovaginal disease and not just say its IBS. Many women diagnosed with this actually have Endo. However some people are just not symptomatic and that is also a problem.
You have people and doctors out there saying the word "cure" there is no cure. What we have is a gold standard for now to help treat the disease the best they can until more research is done on how to detect endo through blood test or urine but we are a long ways away for that. I have taken part in 3 different Endo studies. One for DNA and the other two just recently at my surgery. They took cells and fluid after pathology and are testing them for different cell factors etc. Not to mention people who claim "They had endo and now don't or that they had a baby and the Endo is gone. This is not just doctors its patients as well. So what you have is a disease that some people are symptomatic and some are not no matter what stage they are at. That becomes a huge problem because its like cancer the way it feeds off estrogen and if we died from this disease like people with cancer do then it would be highly recognised. Some people have died from this disease that is the problem and some commit suicide. It is so sad and I have been there because I felt so alone during this journey. Thanks to social media I have thousands of endosisters and I have learned to educate myself and not go by what the doctors here say. I have connections to top surgeons who I talk to as well as long standing advocate for this disease so I go to them with questions I can't answer.
My GP straight up said "I know nothing about Endometriosis" she is young she is female and that made me sick to know that she has gone through medical school and knows nothing about a disease that is hugely under diagnosed by millions of women.
You are lucky as there is a lot of research and help in the UK. I am going to find out which one is the best as one of the top UK Endo surgeons passed away this year but these are some options for now.
Mr. Ashwini Kumar Trehan
Elland Hospital*,
Elland Lane,
Elland,
West Yorkshire, HX5 9EB
T: 01422 324 000
Mr. Trehan's private website
*BSGE accredited endometriosis centre
Mr. Mohamed Soliman Abdel-Aty & Mr. Mark Willett
Lancashire Women's and New Born Endometriosis Centre,
Burnley General Hospital,
Casterton Avenue, BB10 2PQ
T: 01282 804 271
Mr. Kevin Phillips & Ms. Jane Allen
Castle Hill Hospital Endometriosis Centre,
Castle Road,
Cottingham, HU16 5JQ
T: 01482 624259
These are the three closest to you. I know in the UK you guys have NHS or something like that not sure if these doctors accept that but there is a hospital/place called UCLH Endometriosis centre that many women in the UK go to. You can also look on this link as well (not sure it will post a link, if it doesn't I will message you.
http://www.bsge.org.uk/ec-BSGE-accredited-centres.php
Hi Ticked, I am in the UK (York, North Yorkshire) I am seeing a GP who has a special interest in Gyno, unfortunately, not the specialist I thought!
Like I said, I haven't yet been diagnosed with this but sadly all my symptoms are exactly the same. The only thing I wonder is - with all my symptoms, why has no-one ever said anything to me about this? It is obviously a very common illness with women and the GP I saw last time just said 'Some women have to put up with pain and bleeding - there is no answer'
xxx
Like I said, I haven't yet been diagnosed with this but sadly all my symptoms are exactly the same. The only thing I wonder is - with all my symptoms, why has no-one ever said anything to me about this? It is obviously a very common illness with women and the GP I saw last time just said 'Some women have to put up with pain and bleeding - there is no answer'
xxx
Okay I am back. Sorry it was such a struggle for my recovery because I couldn't pee and had to be cathed for 11 days as well as I contracted two infections. I got it out today and I am feeling so much better.
where do you live? What is the name of that specialist? I will make sure it is one of the best ones as there are only around 10 worldwide for 179 million women suffering and some say they specialize when they really what it means is they have operated on people with Endo before. Funny enough some so called specialist refuse to operate on the bowels and bladder etc because its too risky but really its only risky when the surgeon doesn't know what they are doing. A top specialist will have all proper surgeons on hand to help or they do it themselves and its hard to find a surgeon like that. I am lucky enough to have one 45 mins away and I would have travelled 10 hours to see the best of the best.
Let me know so I can investigate, Doesn't hurt to get more than one option :)
where do you live? What is the name of that specialist? I will make sure it is one of the best ones as there are only around 10 worldwide for 179 million women suffering and some say they specialize when they really what it means is they have operated on people with Endo before. Funny enough some so called specialist refuse to operate on the bowels and bladder etc because its too risky but really its only risky when the surgeon doesn't know what they are doing. A top specialist will have all proper surgeons on hand to help or they do it themselves and its hard to find a surgeon like that. I am lucky enough to have one 45 mins away and I would have travelled 10 hours to see the best of the best.
Let me know so I can investigate, Doesn't hurt to get more than one option :)
I just saw your post Ticked. Thankyou ever so much and goo dluck with your recovery. Once you are back in good form I would hopefully like to speak to you. I have just this minute made another appt with a GP who has a specialised interest in Gyno so fingers crossed she will listen to my problems unlike the others!
Thankyou x
Thankyou x
Thank you ever so much for your reply. Your symptoms sound very much like mine and sadly when I told the doctor I had always been suffering from pain and bleeding she replied 'well if you have always suffered from it then it can't be anything bad' ...I just sat there listening to her tell me I basically had to put up with the pain getting worse.
My poor husband is currently putting up with my moaning in pain and refusing love making - it's terrible, we are newly weds and I am only 25 and I feel like I just don't want to make love because it is so painful.
Looking back on my symptoms I have been suffering from all these symptoms for about 7 years.
Thank you for Ticked details - I will surely be contacting her shortly. I obviously don't want to diagnose myself but I have had so much information from people suffering from these wretched illness that I really feel this is the 'alien' I seem to be living with!
Thank you again Lulu xxx
My poor husband is currently putting up with my moaning in pain and refusing love making - it's terrible, we are newly weds and I am only 25 and I feel like I just don't want to make love because it is so painful.
Looking back on my symptoms I have been suffering from all these symptoms for about 7 years.
Thank you for Ticked details - I will surely be contacting her shortly. I obviously don't want to diagnose myself but I have had so much information from people suffering from these wretched illness that I really feel this is the 'alien' I seem to be living with!
Thank you again Lulu xxx
Thanks lulu. You will just have to bare with me as I just had major surgery myself and I still have the catheter in until tomorrow so I will respond with a better answer when I can actually sit down at my laptop as it's extremely hard right now and I don't want you to think I have dismissed your post. For now until I get this cath out you can read my journals and posts as well as my blog as we sound much alike and it took 14 yrs to diagnose me and every test I went to was negative and I went to see over 40+ doctors in those years and if it wasn't for an endometrioma growing when I was 27 I am sure I would not be diagnosed to this day at 37. Hang in there and I will be back tomorrow :) hugs
Ahhh sweetie I feel for you. It does sound to me like you have endometriosis. The ultrasounds are not going to show it. They rarely do. The only way to truly diagnose endo is by laproscopic surgery. You need a referral to a reputable endometriosis surgeon. The only way to get relief is by excising it. It took me TEN years to find a doctor who knew what was happening to me and did the surgery that completely changed my life. I had my appendix removed, was put on all kinds of crazy hormones and narcotics and had spent 6 years in bed unable to work or even do the basics of life. By the time I finally got referred to my surgeon who I consider an angel, I had stage 4 endo and it was literally EVERYWHERE on my uterus, bowel, bladder, cervix, and ovaries. Let me reiterate that this NEVER showed on any diagnostic test that I had done. I had complete reconstructive surgery in 2010 and was symptom free until 6 months ago. I am now suffering tremendously and headed back to surgery this summer- after I plan on conceiving as soon as possible.
I have all the symptoms you mentioned, plus I bleed from my bowel.
Sex is almost unbearable and I bleed afterwards. It's so hard- because you want to be close to your love and this is so intrusive!
Just know that you are not alone and there is help out there.
There is a wonderful member on this site named Ticked and she knows how to point people towards the correct surgeon who can correctly operate. Many docs do not understand this disease and do not remove it properly and this causes it to get worst as well as many complications. She will respond to your thread I am sure.
I agree with you- no one should have to suffer this pain. I wouldn't wish it on my worst enemy.
Just know that there is light at the end of the tunnel- you gotta fight for proper care and be a strong advocate and do not stop until you get it.
You are worth it.
Sending support...
Lu
I have all the symptoms you mentioned, plus I bleed from my bowel.
Sex is almost unbearable and I bleed afterwards. It's so hard- because you want to be close to your love and this is so intrusive!
Just know that you are not alone and there is help out there.
There is a wonderful member on this site named Ticked and she knows how to point people towards the correct surgeon who can correctly operate. Many docs do not understand this disease and do not remove it properly and this causes it to get worst as well as many complications. She will respond to your thread I am sure.
I agree with you- no one should have to suffer this pain. I wouldn't wish it on my worst enemy.
Just know that there is light at the end of the tunnel- you gotta fight for proper care and be a strong advocate and do not stop until you get it.
You are worth it.
Sending support...
Lu
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