Endometriosis

Hello, I have recently been diagnosed with stage 4 endometriosis after insisting to be taken seriously for about 1 year. In the end I went private and finally saw a gynecologist and they put the diagnosis, I am currently waiting to do some more scans and blood tests and hopefully in February I will have laporoscopy. The pain is unbearable and lately I get some sort of indigestion when my menstrual cycle is starting , stomach cramps and bloating are really really bad. Doctors keep telling me to take pain killers they treat me like I am making it up( my gp today when I said I am trying to avoid tramadol as it makes me drowsy and I can't focus at work said and i quote "then your pain isn't unbearable" another one has said on my referral to my abdominal scan after calling the practice pretty much every day " pelvic pain probably do to workout no red flags ), just 2 days ago I passed out and called the ambulance. I am so worried and it's affecting my day to day life, missed work so many times. I don't know what to do and how to manage anymore

[Lindle]

How was it diagnosed?

[Hidden in reply to Lindle]

Had gynecological consultationan, ultrasound, mri and blood tests. I also have a large chocolate cyst (9 cm ) and a smaller one.

[Lindle in reply to Hidden]

Is it a private specialist centre as severe endo must only be treated by a multidisciplinary team, whether NHS or private?

[Hidden in reply to Lindle]

He works for both NHS and Private, from what I've heard he is one of the best in the country.

[Hidden in reply to Lindle]

Reading some of the posts, I realised that in a way I was lucky. I don't know if I had it for years as I never had symptoms until about a year ago, they became worse from August . In October I had my first ultrasound and they discovered the large chocolate cyst, that is when i called my insurance company and they have referred me to gynecology private sector, did the mri which confirmed stage 4 endometriosis. I am just so scared as I also had in February an Lletz procedure (not cancer in the end) now this I don't have kids but would love to and this isn't looking promising.

[Lindle in reply to Hidden]

Just be sure that the surgeon will be working in a multidisciplinary team as required by regulations, the same as would apply in a tertiary endo centre on the NHS. We are finding some very highly promoted private surgeons working alone which is very unsafe. Stage 4 endo will involve complex rectovaginal disease which almost always accompanies endometriomas. There should be two skilled excision surgeons working together to share critical decision-making plus colorectal and urology if the bladder/ureters are involved. Expect it to be at least 10K. Many insurance companies don't cover this complex surgery.

[BNatalie]

I’m so sorry to hear about your experience with GP’s, I’ve had the same experience with some and it’s awful. Please believe me when I say there are some lovely doctors/consultants who totally understand what it’s like and I truly hope you come across one of these as soon as possible. I just wanted to share some of the things that I use to help with my pain:- a long hot water bottle (Amazon)

- sticky heat pads to wear for work during the day (Amazon)

- a tens machine (I have a livia and I find that helps take my mind off the pain)

I’ve also found a hot bath with bath salts help to relax me if I’m in pain

If you get back pain, I’ve found deep heat cream works well for me

I really hope your symptoms start to ease 💫

[Lindle]

Yes it is the right person but it's not about credentials. As said severe endo must be dealt with in a multidisciplinary setting and he doesn't have a private centre. So I would just be sure that he will be operating with a second skilled gynaecologist and colorectal and urologist as required and be sure your insurance company know you need a team of surgeons and not just him.

[Hidden in reply to Lindle]

I will thank you!

[trishabhowmik]

Really feel sorry to hear it.Same things happened to me and at the age of 31 I was diagnosed with stage 4 endometriosis,I came to Uk from Bangladesh and in my country dr could not diagnose it,my bad luck.. It killed my life., its a curse i believe who are having this problem.I also went to private and had gone through a major laprasocopic excision surgery and it took 7 hrs..now I am 33 and tried for a baby and there is no hope. Dr said to try for ivf..My ivf will be started soon..May I know where are yu from and how old are yu? If yu are not old enough then pls do your treatment as soon as possible.. Dont be late..take care..best wishes..

[Hidden]

Thank you for sharing with me. I am from Romania and I will be 36 next month. I am not going to wait, I'll have treatment as soon as they say I can. Doctor said he will do his best to preserve reproductive functions and that my left ovary looks completely fine, at this point I can only trust that they will do their best. I am so sorry you are going through all of this and I hope that ivf will work! Take care! ❤🤗

[CryBaby91]

Sweetie you can't mention docs or hospitals by name, you get in a lot of trouble for that xxx

[Talliebaby]

I’m so sorry you’re going through this as I went through just the same and was diagnosed with Stage 4 endometriosis I thought I had endometriosis for about four years I was constantly going back and forth to the doctors and hospitals trying to get a diagnosis and also trying to get a laparoscopy but nobody took me serious. I felt like I I had nowhere to go or nowhere to turn and my mental health was really at risk. it stopped me from doing daily duties and also resulted in me losing many jobs has most times I couldn’t get out of bed. I’m just really sorry that you’re going through this because I know how painful this can be. I recently went to another hospital because I was in so much pain again when I got there they still made me feel like a bit of a drama queen but they took me seriously enough to put me onto the Gynaecologist Ward and their Gynae doctor then came and seen me. I explained my symptoms and how long they have been affecting me and he said it sounds like you’ve got endometriosis I was so relieved has somebody actually believe me after so many years. He then scheduled a laparoscopy operation for two weeks time I recently had this operation on the 5th of January and am I’m still in recovery but I feel a whole lot lighter and I’m looking forward to the future pain-free for a few years and he said that it will it will come back he also let me know that I had stage 4 severe endometriosis in my Douglas pouch which is where my Fallopian tubes and ovaries lay and this has resulted in my Fallopian tubes being blocked. I can no longer have kids naturally. I don’t mean to scare you this is just my story. I suggest you keep fighting. Please keep in touch and let me know how it goes and I will do the same. Good luck my endometriosis survivor xx

[nsimpson]

I've also noticed I get indigestion pains prior to my period starting. Two things to try... drink some Ginger tea not powdered ginger, fresh Ginger grated and boiled WITH water on the stove. Also the other night I added a few drops of Peppermint oil on my chest and then laid my hot water bottle on my chest which relieved my discomfort

In terms of pain relief from endo I use Nurofen plus with codeine which even though they made me a little drowsy I was still able to work. My other advice is to take pain relief when you feel it starting rather than let it progress.

I hope things start to get better soon. I was diagnosed with Stage 4 Endometriosis 14 years ago and it's no easy road but I hope you will begin to find out what aggravates your symptoms and what things help you to feel better xx