Endometriosis or something else? - Endometriosis UK

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Endometriosis or something else?

Sophie_Louisa
Sophie_Louisa
28 Replies

Hi everyone,

I had a laparotomy a few months ago and since then I have been developing a bunch of different symptoms; I am not entirely sure if they are endo- related or something else and I saw my GP today and she was a bit confused aswell. I was wandering if maybe other had been through the same and would be able to help?

Straight after the operation I started feeling: extremely tired, anxious, jittery and I also experienced heart palpitations and feeling lightheaded. I lost a lot of blood during the operation so thought that the symptoms could be due to being anemic or just because I was tired from the surgery. However a few weeks ago I went back to the gp as the symptoms had not gone down and my appetite had now lessened and I was getting diarrhoea, I had blood tests and various other things done but was still not able to get to the bottom of what the issue is and more recently I have started to feel: bloated, nauseous, constipated and both my heart palpitations and appetite have got worse.

I am not sure whether these symptoms are just due to the surgery or are just because I have endo. I was wandering if anyone had any ideas?

Thanks so much,

Sophie

28 Replies
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angiecxx

Hi I hope you are ok. It sounds to me like it's a mixture of both endo and having surgery. Endo can cause bloating, diarrhoea, etc but the other symptoms could be because of the op. You said you lost alot of blood,so that could explain the other symptoms. I'm afraid endometriosis comes with a huge book of symptoms 😑😑 which aren't nice at all. I think you should rest some more over the few days then when you feel up to it research into what you can do to help ease some of the symptoms. For example alot of women can't eat certain foods because it can trigger endo and cause bloating etc. Find out what helps you. It may take time but it will be worth it if it can stop some symptoms being really bad. Good luck my lovely 💛💛

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Sophie_Louisa

Thanks so much! I started getting quite a few of the symptoms quite a long time after the surgery so I find it a bit strange that it could be linked to it and I even find it a bit weird that they could be linked to endo as even though I have it some of the symptoms I haven’t had before.. it’s a bit weird and frustrating but I have a follow eith the gp in a few weeks so hopefully if symptoms still persist she can maybe test me for some things

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Sophie_Louisa

I’ll read more about endometriosis! Just a bit weird that I keep on developing more symptoms but hopefully we’ll get to the bottom of it

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angiecxx

I know what you mean about having new symptoms. I got some after my hysterectomy, and my specialist told it's all linked to endometriosis. He said some of the endo could of been aggravated during the surgery which has produced new symptoms 😦😦... I don't get it xx

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StefaniaJW
StefaniaJW
in reply to angiecxx

Did your specialist perform thorough excision surgery and not just the hysterectomy? Because you need to get all endometriosis removed. If you don't, getting a hysterectomy won't help because endometriosis is still going to be there and is going to keep growing.

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angiecxx
angiecxx
in reply to StefaniaJW

Hi, no he just done a hysterectomy. I didn't know about excision surgery until well after my hysterectomy. He never ever mentioned it to me in the 8 year's i was going to see him, nor did my specialist before x

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StefaniaJW
StefaniaJW
in reply to angiecxx

Ok, then did you get another laparoscopy with full excision carried out by a specialist at some point after the hysterectomy?

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angiecxx
angiecxx
in reply to StefaniaJW

No, I haven't had any more surgery since the hysterectomy. In fact my specialist discharged me about 6 months after my hysterectomy. I have been back to the drs tomorrow be referred again, it's just a case of waiting and waiting.....

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StefaniaJW
StefaniaJW
in reply to angiecxx

If excision was not performed during the surgery for the hysterectomy, you will need to undergo surgery again. Yes, it is a case of waiting. Yes, it is frustrating. You nees to be resilient and ask your GP to get referred to the surgeon YOU WANT! You have to research and pick the one you want!

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angiecxx
angiecxx
in reply to StefaniaJW

It's so difficult just to see the same gp at my surgery. Everytime I go it's always the same, having to go through my medical history etc. They can't just look at it on the system 😠😠. I will research into finding a endo specialist, but I feel I'm going to have to travel quite far to see one 😕😕xx

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StefaniaJW
StefaniaJW
in reply to angiecxx

Not necessarily. Where are you from?

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angiecxx
angiecxx
in reply to StefaniaJW

I live in Northamptonshire x

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StefaniaJW
StefaniaJW
in reply to angiecxx

There's one working privately in the Midlands/Birminghham if I remember correctly and a few amazing ones working in Surrey/Guildford.

I strongly recommend joining the Nancy Nook group on Facebook and finding the closest to you from the Surgeons International list there

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StefaniaJW

What has the surgeon who performed the laparotomy have to say about this?

You said you lost a lot of blood. Did you receive a blood transfusion or at least an iron IV after surgery? How anemic were you after surgery? What did the haematologist have to say about your situation after surgery?

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Sophie_Louisa

I wasn’t that anemic actually! My blood was at 95 when it should be at about 120.. I had blood tests a couple of weeks ago and they came back fine for anemia so seemed to have caught up now

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StefaniaJW

why was the laparotomy performed (if I may ask)? It should only be perfomed in case of emergencies as the vast majority of surgeries are carried out by laparoscopy nowadays (including invasive ones like a hysterectomy)

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Sophie_Louisa

I had a 20cm overian cyst!! I had my ovary, Fallopian tube, cyst from the other ovary and appendix (I had an endo growth on it) removed

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StefaniaJW

It still could have treated via laparoscopy. Also why were the appendix and Fallopian tube removed?? Were the cysts endometriomas? What were you told after surgery.

I'm going to tell you why I'm asking so many questions. If you had endometriomas on both ovaries and possibly endometriosis elsewhere, it sounds like you have endometriosis that has developed to a very severe stage.

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Sophie_Louisa

I had a follow up appointment but unfortunately am still waiting the referral with an endo specialist so don’t know all the ins and outs but I’m pretty sure that I had to have a laparotomy as it was the whole ovary and not just a cyst and I’m also pretty sure that generally when people get their ovary removed they also get the Fallopian tube taken out as they are linked to each other

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Sophie_Louisa

Will be interesting to hear what the specialist will say though! Is your endo pretty severe?

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StefaniaJW

That is absolutely untrue. As I've told you, hysterectomies are performed via laparoscopy, meaning even if a woman has to remove both her tubes, big cysts, both her Fallopian tubes and uterus, it will be performed via laparoscopy.

Maybe your cyst was too big, but even such big cysts are removed via laparoscopy (see medical case here: ncbi.nlm.nih.gov/pmc/articl...

A laparotomy is usually only performed by non-specialised surgeons who are not skilled in the laparoscopic technique or in case of emergency (e.g. if your cyst had ruptured).

Also, "I’m also pretty sure that generally when people get their ovary removed they also get the Fallopian tube taken out as they are linked to each other".

No, that's not how it works usually. Fallopian tubes are NOT liked to the ovaries, they are just linked to the uterus. What might have happened in your case is that the cyst was so big it touched and possibly damaged the tube, thus leading the surgeon to remove it, but I still think there might have been a chance an experienced excision surgeon might have saved your tube.

What makes me mad is that you don't know why certain procedures were performed (why a laparotomy and not a laparoscopy, why removing the tube) even though you had a follow up appointment and your surgeon SHOULD have explained all these things in detail and given you pictures of the procedure.

Clearly the surgeon was not only unskilled and very superficial during surgery, but during the follow up appointment as well.

I hope you have the pictures of the procedure to show the endo specialist and I hope you get an extremely skilled excision surgeon to perform it next time :(

Best of luck in finding a very experienced and skilled surgeon!

P.S.: my endometriosis is not severe and I have never undergone surgery

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Sophie_Louisa

I double checked with my parents and i had a laparotomy because the cyst was so big (I know that you’ve said that very large cysts can be removed as a laparoscopy but mine was exceptionally large so it was more safe), I also had the Fallopian tube removed as it went into the cyst.

The surgeon who performed the operation is very experienced and he was very informative and helpful at the meeting it was just a lot of the finer details will come from the endo specialist, he does not explicitly focus on endo so only so much he could tell me.

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StefaniaJW

Ok, now it makes more sense and the Fallopian tube was rightfully removed, but unfortunately I have to tell you that had an experienced ENDO EXCISION surgeon performed it, you most likely wouldn't have needed a laparotomy and I am so so sorry you had to have it since it's a much more invasive type of surgery.

I hope you rested for at least two months after it :(

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Sophie_Louisa

Just the luck of the draw unfortunately! Everything else was done very efficiently in terms of how long I had to wait for the referral and for the operation.. can I ask what your occupation is? Just you seem very knowledgeable and confident with everything

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StefaniaJW

I am getting an MBA. I know I am knowleadgeable about this because I have asked other surgeons. Obviously I do not know everything and always do my research. Thst's why I linkedin the pubmed article

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sframer

I sometimes get anxious, jittery, light headed, nauseous when I'm about to have a bowel movement. Watch to see if those issues come and go with your bowel movements. The endometriosis messes with your bowels and the vagus nerve can become irritated with crazy bowels and can cause these symptoms. I'm no Dr, just sharing my experiences and what I've read :)

I don't have a cure, but if this is what's going on, being aware of the cause is helpful. The best thing I can do for myself is to keep by bowels moving (i take Metamucil so I don't get backed up) and to go as soon as I feel the need. Holding it makes me feel worse

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Sophie_Louisa

Ah ok, thank you! Yeah the gp said that she thinks that some of my symptoms are linked actually she prescribed me this drink to make me less constipated and then hopefully in turn I will get more of an appetite etc

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