No endometrosis found

[Cecex]

Hi I've never posted before but I was just looking for some advice.

I recently had a laparoscopy and abdominal myomectomy and another procedure to thinnin the lining (Sorry can't remember the name) they removed alot of scar tissue from my abdomin. They said the scar tissue was from when i had ruptured appendix removed when I was 17 I am now 31 (I have a huge vertical scar from above the belly button to just above the bikini line) I had all procedures in the same op. It's the 2nd polyp removal in a 12 month period. The surgeon said he could not find any endometriosis. He found fibroids, polyps and a lot of scar tissue he removed polyps and fibroids and 95% of the scar tissue.

It's been almost 3 months and there's no change. The periods are not lighter still very heavy still enormous blood clots still terrible cramps still have leg pain which is now worse. when I had large polyps removed last year it at least eased up slightly they were heavy just not as painful for a few cycles before returning to living hell.

I've suffer from painful cramps, very heavy periods, leg pain, chronic anaemia to the point of passing out every now and then if I bleed too much. I've had blood transfusions and iron transfusion over the years. I take strong co codemol for pain and tranexamic acid to help with bleeding I bleed around 8 days now with the tablets instead of 12 to 14.

I live in fear of my period i can only work part time because I'm so tired or on my period or recovering. I take so much time off. Luckily I am cover by occupational health or i would have lost my current job by now. Ive lost many others because of whatever this illness is. I plan everything around it. I have even contemplated suicide over the years sometimes when the pain is at its worst. I wouldn't do it but sometimes you just feel like you can't go through it again and again cycle after cycle year after year it really get you down. I have tried the pill, the coil, the implant, the injection and they either didn't help or made it worse. I've just had enough of not knowing what's actually wrong with me. I don't know what to do next, even the surgeon is stumped and he is supposed to be a specialist! I've even been to a heomotologist specialist they said something is not quite right but again stumped they thought they have a better idea after this past surgery but no I feel like I'm going around in circles passed back and forth to different specialist for years now.

Any advice would be so appreciated. Sorry for the grammatical errors I am sure I have made. I've never posted anywhere and i hate typing. x

[elisepalmer71]

Hi. I was so sad and sorry for you when reading this. I’m not sure what help I can offer other than to ask are you seeing and endo specialist or just gynaecologist? When did you last see him? And can you get back to see him. I can identify with some of this when I was at my worst years ago. Do you mind me asking how old you are? Have you had fertility problems? Can you try some things again? Maybe they didn’t work the first time but they might work this time? (My daughter takes the pill and only has 4 breaks a year that we limit to 4 days). Keep persisting. Out of all of it, what’s the thing that you want sorted the most? The pain, the bleeding? Have you been referred to a pain consultant? Treatment is always changing, so there is always hope. If it’s any help, I am sending a big hug (one that lasts several minutes and squeezes you gently whilst letting you hopefully feel a bit soothed). We are all here to support you. Take care. Many blessings. Elise. X

[Cecex in reply to elisepalmer71]

Hello thank you for replying. I'm 31. Yes I have been told I will be refered to a pain specialist. I think if the pain was sorted out I would be able to deal with bleeding better but the combination of the two just makes me feel helpless. I've tried alot of different types of contraceptive control and I just either bleed more, more pain or both so I've given up with those. My mum had similar issues they never found out exactly what was wrong with her. She had alot of surgeries and complications before during and after pregnancies as well. I have been trying but I'm worried because of all my mum went through.

Thank you for your advice xx

[NW248]

Have you ever had a abdominal MRI? That would show up if there is endo in any areas they don't usually go poking about in. Get referred to a specialist on the BSGE.org/centre list.

[Cecex in reply to NW248]

I have had MRI but for a somthing else I will definitely find out.

Thank you for your advice xx

[Ginger24]

I am so sorry to hear all of this. One thing that comes to mind with this is something that endo specialists are currently considering in micro endometriosis. This isn’t solidly identified but what they think it is is when there a microscopic endometriosis tissues dotted around. This still acts in the same way trying to shed off with your period etc but is undetectable hence why they are only just starting to consider it, for the cases where someone has all the symptoms of endo but physically there is no evidence of it. The best way to identify endo is a laparoscopy so having more scans etc isn’t going to show it if they didn’t see it. But what I would say is that if you speak with an endo specialist what they will say is that even if it is this microscopic endo it is hormonally controlled so the best way to manage it is with hormonal method such as the coil, the pill, depo injection etc. If these aren’t working to reduce the effects, even just a little bit, it is less likely to be endo. That’s not to say it will not be, it’s just less likely.

Also something I would say is that if you are feeling down and depressed speak with your GP and look to improve this. Being depressed and stressed significantly affects the way your body feels pain. So if you are down your body will feel pain more. This is something I have struggled with not just from all my endo issues and I’m now starting to see a reduction in the way my body feels pain.

[Cecex in reply to Ginger24]

Thank you for your advice I will look into this. I probably have to change my gp again because when I talk about being extreme depression she just blame the pain and periods and signs me off for a month which actually doesn't really help. They call me sick note cece and that makes it even worse. It's hard to find a helpful doctor the one I have now is better than others that I've had. I feel like they only really listen when something bad happens

Thank you for your advice xx

[woodbon in reply to Ginger24]

I don't know how well they can diagnose these things now, but back in the 80s it took me a few years to get the diagnosis of endometrosis. Keep on going to the GP and tell him you are having these problems, don't just let it go. I know your Gynocologist hasn't been able to give you any reasons, but another Gynicologist may be able to help you morre. Good luck!

[Peebles2sarah]

Hi I had a similar experience but my family doctor was uncertain so put me on Visanne anyway! It has helped a ton and has proved that I do have endo, despite my gyno not "seeing any". With some research, he has determined that I have what is called "colourless" endometriosis. Please look into it!! Endo/cysts can cause scar tissue as well.

[Cecex in reply to Peebles2sarah]

Thank you for your advice I will definitely look into this xx