Hi all, I have been going through the process of being diagnosed with endometriosis from the age of 16. Now at 24, I don't feel any closer to an answer.
I have been being monitored by a gynaecologist for the past 2 years, he told me (as have numerous of my GPs and Doctors I have seen during trips to A&E) that they suspect it is endometriosis. After nothing showed up on any of my multiple ultrasounds or MRI, his course of action was to prescribe me Ponstan and the pill. When I asked about a laparoscopic surgery he said they would only consider doing this if I was having trouble getting pregnant as it's a risky surgery. But then I come online and see that the surgery is the only way to properly diagnose endo and that although risky, (as are all surgeries) it is common practice and few women have trouble being referred for one.
I can't understand why my gynaecologist is refusing to refer me for surgery. Honestly, he makes me feel like a crazy person who is just dying to have a surgery with the way he tries to defer me from the idea. When in reality all I want to a proper diagnosis so I know what is going on with my body and how I can treat it, and so that when people ask why I have cancelled plans or why I have taken so much time off work or why I've had to sit on the ground in the middle of the street due to pain I can tell them SOMETHING.
If there was another way to get a diagnosis then I'd take it, but there doesn't seem to be currently. I also want to rule out that the pain is coming from something else. I'd hate to find out in a few years that it wasn't endo at all and I've wasted time just taking painkillers when I could've been having treatment.
Has anyone else had trouble with this? What should I do?
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niamhmain
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I know it's frusterating trying to get relief and the best treatment for you as well as answers.
I finally had a laparoscopy but it was only diagnostic so they looked around but didn't treat anything. They already knew I had a fibroid tumor from an ultrasound but they also found endometriosis which was not on the ultrasound.
I'm super eager to get another lap to remove the endo but my doctor wants me on Zoladex to shrink the endo.
Maybe your doctor is trying to exhaust all the non surgical options like birth control pills or mirena or hormone suppressants and all that jazz.
I would ask if he or she is trying to shrink the endo for a few months before surgery? Or if they're trying other options first?
maybe get a couple second opinions from other doctors as well if you get a copy of your records.
Are you able to switch to a Gyn/OB who will do the procedure for you? Laparoscopic surgery really is the only way to diagnose endo, as diagnosis must be made visually. The surgery is very straight forward and doesn't come with too many risks. Recovery time is fairly short. I would push for the surgery, and if he still refuses then I'd find someone who will do it.
It might be that your gynaecologist doesn't have the necessary skill to effectively treat endometriosis with surgery (unfortunately a lot of general gynaecologists don't). Painkillers and birth control pills will only mask the pain and actually can allow endo to do more harm. I'm speaking from experience unfortunately, as I was fobbed off like this for years
My advice to you would be to do your research, find a good excision specialist who will be able to effectively find and remove endometriosis through a diagnostic laparoscopy and ask your GP to be referred to them. Excision is meant to be the gold standard treatment for endo and if done properly may prevent you having to have multiple surgeries later down the line.
I don't know which part of the UK you are in but there are some really useful Facebook groups around that provide info on excision surgery etc.
Hi there, so sorry to read you have Endo, I understand the frustrations you are having at the moment not only with the pain but with the Gynaecologist.
I was diagnosed at the age of 18 after another form of Gynea operation that I had, I was told that I had Endo and pollcysic ovaries but it wasn't truly explained to me what it was. I'm now 52 and inbetween my 20's I had 3 children which at the time of being diagnosed, I was told it would be incredibly hard for me to fall pregnant, I'm so glad they were wrong !
At the age of 28 I had a full Hysterectomy leaving only my Overies behind, in some ways I was very happy, " wahoo" ... I thought no more periods for me and I must admit I had a great life practically pain free until I reached 48 then it seemed to be pain after pain after pain in pelvis area but not thinking it was the Endo and after numourous visits to the doctor and them telling me it's my bowels or it's this or it's that I ended up just putting up with it. Then one night I was taken very ill I was out with a friend I had only been out an hour I was doubled up in pain all I wanted to do was whip my jeans off and lay flat. I drove home to a startled husband wondering why I was home so early and crunched up in pain. I left him and my daughter down stairs and went to bed. I must of been there 15 mins and I just couldn't bare the pain any more I was screaming out in pain ( not like me ) ! I just felt so ill and the pain was excruciating. My husband and daughter came up to see me wriggling around on the bed and looking as white as a sheet, they called a NHS number and nurse on the line told my husband to take me to nearest hospital. To cut a long story short, it took the hospital 3 days to find out what was wrong, Endo can cause secondary pain which means in my case I was getting pain all over my pelvis, both sides and adomanal area, which didn't help the specialist in pin pointing where the cause was coming from. I was on pain relief drip of a high dose for the entire time. At one stage The specialist thought I had kidney stones, so I had an MMR scan, and a external and internal ultrasound, and it was that internal ultra sound that found the cause. Shock and horror it was a Chocolate cyst of the size of a grapefruit that had burst. They call it chocolate apparently because that is what it resembles, sticky dark blood that builds up and is full of cyst like puss.
On the 4th day they said I could go home, I asked them please remove it......my daughter said I looked so disappointed when they said no, she couldn't understand why I would want an operation straight after what I had been through. Well they said no and that was that.
2 months went by, I was still getting pain not like before the rupture but just uncomfortable pain in the right of my pelvis. Finally after a couple of trips back and forth to the doctors I was referred to another Gynaecologist I was told to have another ultrasound in which I did do, then they found that the ruptured chocolate cyst had grown again and they thought it would be in my interest to have the cyst and my overies removed, giving me a second hysterectomy. I had to have an injection every month for 6 months to shut down my ovaries. When it came to the operation the chocolate Cyst was the size of a grapefruit and it had spread all over my pelvis and urethra tube practically every where in that area, I was told for certain reasons that they could not take it all out because of worry that it would destroy blood vessels to legs and other places. This in turn now means I cannot take HRT for menapuase, because it would very slowly grow back if I have hormone replacement.
Also I found out that it is hydreatory and that my youngest daughter of 25 has it now bless her, she also was in serious pain and had a ultrasound done only to find a 2 inch cyst in her right side of pelvis. They have told her no operation yet and to go back on pill until she wants to have children.
I myself feel the pill doesn't help, I was on the pill all those years ago and I swear the hormones that is in the pill just feeds the Endo. Though the pain has seized for my daughter at the moment while she is on the pill, she was also told by her Gynaecologist that it should shrink while she is on it ??? I dread to think what she will go through once she comes off of it and I also feel that It is unhealthy for any woman to be on the pill for any lengthy time.
My advise is read up on Endometriosis do your research, and when you go back to your Gynaecologist be loaded with questions, ask about the hormones in the pill, ask about the cyst still growing whilst on the pill ask them to explain in their words what Endo is and not to take no for an answer, don't be rude just firm with your questions, you have a right to understand what is going on in your body and not to fobbed of with what they think you should know.
I have my own understanding of what Endo is and what it does to the body but I do not want to share in case of scareing you or getting it wrong that's why I feel you need to do your own research. Be loaded with information that you can then take to the Gynaecologist.
Bless you I wish you well and that you get the care you need for this horrible decease many women all around the world get. X
Hi
I had trouble getting referred to a gynaecologist for years and i was told my pain was psychological. Eventually after 13 years of visiting the GP I finally got my diagnosis but the gynaecologists refused to give me any surgery to remove the endometriosis. I am now under a different gynaecologist and i am currently waiting to have another laparoscopy for treatment. I would possibly ask to see another gynaecologist.
I'm in the same boat, at 20 I've been told I'm too young as I'd "only have to have surgery again when I wanted kids" and they wouldnt do that (love how they also assume that at 20 I don't want them anytime soon which isn't the case)
They've put me on various different pills which have all impacted on y life negatively in one way or another when I just wish I could have surgery so they'd either say it is or isn't, amd work with that rather than just guess work.
Have you seen about being referred to an endo specialist? I had to push and push my gp because they thought the general gynaeo was the be all and end all of the medical opinions.
Hi, maybe I have misunderstood but it sounds like you and your gynaecologist are taking about different things. A diagnostic laparoscopy is a fairly straightforward procedure without much risk. They just take a look (albeit that the gynaecologist needs an eye for it). However laparoscopic surgery could be understood as referring to excision, which is the cutting out of patches of endo and definitely incurs some risk. Depending on where the patches are, different kinds of surgical skill are required. Gynaecologists often team up with a colorectal surgeon.
When I was seen at a BSGE centre, they proposed two lots of surgery. First, a diagnostic lap to see exactly what was there (I already had two, so diagnosis was already given), then a chemically induced menopause to shrink the patches as much as possible, then excision surgery done laparoscopically. I think this makes sense if the endo is severe, but you don't have a clear picture yet. I can completely understand why you want the diagnosis confirmed.
My gynaeo says they won't even consider me for a diagnostic lap until I'm "old enough to want children" so I think OP might be in a similar position here, a lot of them seem reluctant to offer it unless there is fertility issues!
As I understand things, they are commissioned to offer it. They shouldn't be restricting access to a diagnostic test. I'd challenge it (if you have the energy).
Yeah I wish, I've pushed and pushed but nothing will budge, other than going priate which I can't afford. Seeing a BSGE specialist in October so hopefully something will give there
I'm on the same position; I'm 34 and have been told that 'time is running out' if I want to have kids, but being recently single (dumped in part because of the possible endo) the consultant I saw seems to think that I'd be better off on the Pill for a while longer? So frustrating, I just feel like everything so far has been very vague. I wonder if different health trusts have different guidelines about the diagnostic surgery?
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